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Thursday, May 30, 2013: HOME!!!!!

Tucker’s Homecoming from Tommy Sibiga on Vimeo.

Photos courtesy of Sarah Lynn Saunders:


Tuesday, May 28, 2013

I’m watching some Arrested Development while sitting in a Ronald McDonald sleep space while Ellie is sleeping crib side back in the PICU. For the next 36+ hours, we’re in charge and are “rooming in,” at the hospital. Doctors and nurses want to give us a chance to provide all of Tucker’s nursing needs between now and discharge. We took full advantage of this opportunity and wheeled him out to the rooftop garden to eat a home-cooked meal with some friends.

Things are lining up for a Thursday morning departure. And our house is ready for our little man. Contractors finished up today and cleaning crews are working their magic. 320+ days later and we can’t even describe how excited we are to be HOME! Keep praying for things to go smoothly….we’re so close.

Monday, May 27, 2013

I am sleeping in my own bed tonight for pretty much the first time in six months.

Our house is still littered with boxes and medical supplies, but we are here and we are home and I think I’m finally starting to feel grounded again.

Tucker’s discharge is planned for Thursday.

Tommy, Lyla, and I moved back into the house today.

The contractors are coming early Tuesday morning to finish some various odds and ends, and Servpro will come in behind them to clean and help put our house back together.

Tucker is doing well – smiling and laughing up a storm. His vent settings have returned to his baseline and his oxygen requirements have decreased.

We decided to discontinue Tuckers mist collar trials until he is home and stable. We will try again in a few weeks once we know he’s at home for good and ready for those changes. Long story short, we were a little overly aggressive in trying to extend his time off the ventilator. Next time, we will take the mist collar trials much slower so we don’t wear out his respiratory reserve.

We are excited to bring him home and see how he thrives being outside of a hospital environment.

Please join us by praying for all the logistics and work that needs to get done over the next 72 hours for our family to be together in our home for the first time in almost a year.

Monday, May 20, 2013

Tucker made a little move down the hall today to the step-down unit, because he no longer needs ICU level care.

He will spend the next week there until we discharge home after Memorial Day.

Tommy asked me if I was excited about the new change of scenery and I shook my head.

A new team of doctors. Another set of nurses and respiratory therapists.

Truthfully, we are just so exhausted and so done with our time in the hospital.

While we feel confident that waiting until our house is livable again and Tucker’s nursing coverage is better established is the way to go, both of us are eager for normalcy, for a routine, for a chance to live life as a family outside of the hospital.

If you could pray for fortitude and perseverance over the next week, we would appreciate it.

Pray that Tucker stays healthy. Pray that the contractors finish our home on schedule. Pray for night nurses – we still need them!

Friday, May 17, 2013

Sorry for the lack of updates. We have been working hard to find nurses and meet with contractors as they continue to repair the water damage in our home.

We are still in the PICU at MCV.

Tucker is stable and ready for discharge; however, after a lot of consideration and discussion with doctors, we decided to wait until May 27th May 30th to discharge back home.

That’s the first week we are can have a relatively full week of home nursing scheduled.

It’s also the first week that we are able to move back into our home.

We feel that the extra ten days in the hospital will allow for a smoother transition home the second go-round, knowing that we can have support lined up for Tucker’s care, and that Tucker’s long-awaited homecoming will be in his home.

In the meantime, the pulmonary team is taking advantage of Tucker’s time back in the PICU by doing mist collar trials.

Mist collar trials are where Tucker is not hooked up to the ventilator. Instead, he breathes on his own through his trach with some oxygen “misting” or blowing over top of his trach opening through a mask attached to a hose.

The goal is to get Tucker to the point where he is only on the ventilator at night and on mist collar during the day.

They were hoping to accomplish this goal by the end of the summer. Yesterday, Tucker did a total of 8 hours on the mist collar during the day, so we are thrilled at his progress ahead of schedule.

Being on a trach collar at home will also make Tucker’s care during the day simpler and more manageable, so this is great news for the next time we bring him home.

Saturday, May 11, 2013

Since Tucker is back in the PICU for a few more days (no talk of discharge plans yet), we are trying to take this opportunity to recruit more nurses for when Tucker goes home again.

At this point we have a couple of folks willing to do some PRN (part-time hours).

We have contacted seven local in/home nursing agencies, and unfortunately no nurses are available with the qualifications needed to take care of Tucker.

At this point we are trying to piece together a team of nurse friends who would be willing to cover one or two 8-hour shifts per week.

The qualifications are the individual has to be a certified RN or LPN and has to have had experience with a ventilator.

Our total goal is 40 hours per week of help (that allows us to have an open case with Pediatric Connections so that we can continue to recruit more nurses).

Our biggest desire is 6-8 hours at night, but at this point we are eager for whatever people can offer.

We should be upfront, the hourly rate is not equivalent to that of a hospital or critical care center, but it would be an opportunity to make some extra income in home setting with a one-to-one patient.

Also, Pediatric Connections will reimburse for mileage to and from our home in Hanover County.

Our contact at Pediatric Connections who coordinates the placement of our in-home nursing said she will “do whatever it takes” to get RN friends certified and in their system to join Tucker’s team this week.

If you are interested in getting signed up with Pediatric Connections to help provide nursing for Tucker, please contact Ellie at (804) 363-3710.

Thank you!

Friday, May 10, 2013

I just got back into the PICU this morning around 8:30. I was greeted with lots of gummy smiles and a much “pinker” Tucker than we left yesterday evening.

He has pretty much returned to his baseline and his respiratory settings are trending back down.

I think it’s safe to say he sufficiently scared the bejesus out of us on Wednesday morning, and he’s scared us many times before. Not like this.

Seeing your child code at home, especially on your first night home with him home, is terrifying beyond words. I think the image of Tucker lifeless and blue is one that will be permanently imprinted on both our minds for a long time.

As I was bagging oxygen into his trach, I kept praying, begging “Lord, we aren’t going to go like this. After everything we have been through, this is not how we are going to go.”

There have been various points on Tucker’s journey where I felt like I was “willing life” into our child. I have never willed life into his little body like I did Wednesday night as I stood over his crib and bagged while Tommy did chest compressions.

We are thankful for CPR training that we got twice (in Richmond and Boston), and that Tucker responded to it and hung with us until we got to the ER.

We are trying to figure out what exactly went wrong. Tucker’s trach tube was totally clear when they pulled it in the ER. We had his spare trach lubricated and ready to swap at home, but once EMT arrived, they also felt like his trach was able to move air to lungs.

One thing the docs are checking into is whether Tucker might need a slightly longer trach tube.

Regardless, we are thankful he is okay. That we were able to act quickly and maintain clear heads. That Jesus was in the midst of the most desperate moments.



Thursday, May 9, 2013

So here’s the thing…yesterday we discharged Tucker from the ICU.

And less than 24 hours we are right back where we started.

Suffice it to say, we have had a scary six hours.

Long story short, around 3 am, Tucker began acting agitated and coughing.

I was awake and noticed his monitors began ringing off with a dangerously low heart rate. His sats dropped quickly and he became limp, blue in color and unresponsive.

CPR training quickly kicked into gear as Tommy began chest compressions and I bagged Tucker’s trach. I continued to bag Tucker as Tommy called 911. I bagged Tucker and was able to get his sats back up into the 80′s but he was still clearly in respiratory distress.

I kept bagging Tucker until the ambulance arrived and a respiratory therapist took over.

We were rushed back to the ER at MCV. After the ER docs continuing to bag and suction, they made the call about an hour later to change the trach altogether.

Tucker’s trach was patent (not plugged), but the doctors believe it may have been partially dislodged or collapsed within his trachea.

Additionally, his white blood cell count was very high so we are now waiting for labs to come back and let us know if he’s sick.

Not sure when we will get out of the hospital again at this point.

Right now we are just trying to catch out breath and let Tucker recover.

Monday, May 6, 2013

The general contractors are downstairs replacing the drywall in the kitchen ceiling as I write this.

Tommy and I did our first official “trach change” yesterday where Tommy pulled out Tucker’s trach and I put a new one in. It went great – Tucker didn’t even drop his oxygen sats and Tommy and I were way smoother than we thought we’d be.

We have one more full day of specialists consults inpatient (Tuesday) and the goal is to discharge Tucker on Wednesday….

Except we are still 0-3 on finding any available home nurses. We are prepared to discharge without home nurses lined up, knowing Tommy will have some more availability during the month of May as he transitions jobs; however, having nurses at night so that we don’t have to sleep in shifts with Tucker (and for the peace of mind of Tucker’s medical team) is important.

If you know of any home nurses in the Richmond area that would be willing to work with our family, please let us know! The individual needs to have experience with a child on a ventilator within the last six months.

You can email me at Thanks so much!

Saturday, May 4, 2013

Last weekend in the hospital? Most likely!

Tucker’s enjoying his new private room at MCV and he is loving meeting new doctors and nurses as they stop by and enter his room. He’ll greet you with a stare and a raised eyebrow as he wonders why you’ve entered his room. Our new friends from The Pediatric Connection stopped by yesterday and brought a load of new supplies and equipment that will come with us during Tucker’s discharge. They walked through a large amount of hands-on training with us and they plan to come back Monday to finish our training. They also switched Tucker over to his take-home ventilator. So far, he is doing awesome on it! His oxygen requirements are still a little high for discharge but we’re hoping that they’ll come down within the next few days.

The home oxygen concentrator only goes up to 40%, soTucker needs to be on 40% oxygen or less to be considered safe for discharge. Right now he’s hanging at 45%, so please pray that he can achieve this goal comfortably, otherwise it will prolong our time in the hospital.

Reflux. We’ve had some issues with managing Tucker’s reflux since arriving at MCV that I think we now have a good handle on. Tucker experienced sensitivity to a slight change to some comparable reflux meds. We’re now switching him back to the exact ones he was on in Boston.

Nursing. As predicted, lining home-care nurses proves to be our most difficult challenge. The hospital wants us to have a large majority of nursing hours fulfilled prior to discharge and we’re having trouble finding an agency that has the staffing needed. There are a lot of folks working on this for us, they just need to find the people who have the availability. If you know of any night nurses (maybe 10pm-6am?) out there who have at least 6 months experience with ventilators….let us know. We’d love to connect.

Discharge. Up to this point, surgical rounds and conversations have mentioned a goal of discharge for Monday (May 6th). The nursing piece might not make that possible. Tucker’s oxygen needs also may hold things up. Conversations are now moving towards a Tuesday discharge. We’ll see how it all plays out but we’re very optimistic that at some point this week we will be “home” with Tucker.

Our home. Our house is in full-on demolition mode. The walls and floors are moisture free and we’ve been given a green light to reconstruct. Our contractor’s crew should begin putting it all back together on Monday. Our plan is to stay in our house until Tucker is discharged and at that time we’ll move over to our friends’ house. Once again, this is not TLC’s “Bringing Home Baby,” but we’re so eager to finally be with our son in a home environment. Our new living situation is a really sweet set-up and we’re so excited to live with some friends.

So….the prayer requests are; oxygen levels, nursing, a quick discharge, and a fast, thorough home repair

Thursday, May 2, 2013

Rick Warren said the ultimate test of faith is not how loudly we praise God during happy times, but how deeply we trust him during dark times.

No doubt, we have felt like we are being tested “heavily” this week right as we approach the finish line of Tucker’s 9.5-month medical journey.

(In case you missed our update earlier in the week, a water valve to our upstairs toilet broke and flooded part of the upstairs, including Tucker’s nursery, and the majority of our downstairs kitchen and foyer). A contractor came and demoed Tommy’s hardwood floors, a lot of carpet, and a large portion of the drywall in the kitchen on Tuesday. He also shared with us that we need to be out of the house for at least 3.5 weeks to allow them time to replace everything that has been water damaged.

Tucker’s discharge is tentatively planned for Monday, so as you can imagine – the irony in all of this is that the week we finally get to celebrate his long-awaited homecoming, we are homeless.

Fortunately, some good friends who live nearby with a lot of square footage offered us their home yesterday. We shared with them that we are aren’t an “easy ask,” and that taking us in also comes with an entourage of home-care nurses and medical equipment for Tucker. They reassured us that they are willing to let us live with them regardless. They have two open bedrooms upstairs and an upstairs living area. They also live walking-distance to a big shopping center with a grocery store and several restaurants, so we are looking forward to being able to take Tucker out in his new stroller and around their neighborhood.

Speaking of our little man, he’s been doing great since his arrival back in Richmond. His transfer was uneventful and easy. The only time he needed more oxygen was when he had a major blow out in his carseat while we were up in the air. The six-passenger medical jet is tiny (much like a puddle-jumper), and the smell was enough to knock all of us backwards. I think the crew could have used some oxygen of their own.

The transition to MCV has been seamless, too. MCV and Boston Children’s did a ton of correspondence the three weeks prior to our transfer. MCV was so well prepared for Tucker’s arrival. Everyone has been on the same page about the goals for his time there: getting introduced to the specialists who will care for him here, and working towards a discharge. We have felt grateful for all of the coordination and conversations that took place to get us here.

Now we just need to work towards getting “home,” even though home doesn’t look like we thought it would initially.

This scripture has never felt more true for our family than this week:

6 For God, who said, “Let light shine out of darkness,”made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ.7 But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed. ~ 2 Corinthians 4:6-9



Monday, November 26, 2012

After 135 days in the NICU in Richmond, we have now transferred to Boston Children’s Hospital. For updates while we are in Boston, click here or it’s now a menu item on the drop-down list.

Monday, November 19, 2012

We have some good news and some not so good news this afternoon.

The good news is that Tucker’s ophthalmologist came by yesterday afternoon to re-examine his eyes post-laser surgery, and he was very pleased with the results. He will do another exam next week to check them again, but felt satisfied with the affects of the procedure.

The not so good news is that Boston called today and postponed Tucker’s transfer date indefinitely.

This was really hard news for us to hear given how much we’ve been anticipating next Monday.

After discussing Tucker’s respiratory course together today, Dr. Foker and the neonatologist and pulmonalogist in Boston feel that Tucker’s lungs aren’t ready to take the “hard hit” that this kind of surgery entails given that Tucker still has lung disease from being born so prematurely. To proceed with the surgery with Tucker still on a high flow cannula would not be the safest option.

We asked about next steps and they said their pulmonalogist will be checking in regularly with Tucker’s neonatologist here in Richmond to revisit a new date for transfer.

Please pray for our family tonight as we continue to digest this tough news. Pray for wisdom for Tucker’s respiratory team here, that can continue to get him to a place where he is more respiratory stable and ready for esophageal surgery.

Wednesday, November 14, 2012

A much overdue update since Tucker’s laser surgery on Sunday. The surgery went well and took about an hour. The ophthalmologist treated both eyes as planned, and was able to perform the surgery right at Tucker’s bedside with the help of one of Tucker’s favorite nurses.

Unfortunately we won’t know for sure whether the laser surgery stopped the progression of the ROP for at least 1 – 2 weeks post surgery. So at this point we don’t have any “results” to report other than the surgery went smoothly and Tucker-man is a trooper. We are praying for good results this Sunday when the ophthalmologist comes back into to examine Tucker’s eyes.

In other news, Tucker is doing well. His weight last night was 7 lbs 12 ounces, so we are getting closer to the 8 lb marked (and Tucker has now surpassed the weight Boston wanted him to be for surgery).

Yesterday, Tucker generated a little excitement in the NICU by “grunting out” his Gtube. His Gtube is the port that goes directly into his stomach (the method by which we feed him between now and when he gets his esophagus repaired).

Apparently he grunted and popped the Gtube catheter out, which was cause for an emergency visit by the local surgeon to put a new one in. When Tommy and I came in yesterday to visit, the doctor and a group of nurses were clustered around his crib looking at his open Gtube site.

Tucker was bright-eyed and happy, looking around at his observers like, “What did I do?”

Friday, November 9, 2012 – Part B

Eye surgery is on and scheduled for this Sunday afternoon. Both eye doctors feel that it is best to stay ahead of the ROP. They will treat both eyes, although one is slightly worse than the other. They want to make sure the left eye does not progress any worse as they treat the right eye.

Praying that this surgery is effective at stopping any more growth of abnormal vessels behind Tucker’s retinas. Tucker’s eyes will need continued monitoring post-op as he heads to Boston.

Friday, November 9, 2012

A few people have checked in about Tucker’s eyes. The ophthalmologist decided to hold off on surgery yesterday evening and get a second opinion from another doctor in his group. He said he does not feel like Tucker’s ROP is progressing fast enough right now to require immediate intervention this week, but he going to watch it closely.

Please pray for Mr. Tucker’s eyes – ROP can regress, progress, or stay the same. Our prayer would be that it regresses or stays the same to a point where no intervention is required.

Thanks for continuing to lift our family up in prayer. 16 days until Boston!

Wednesday, November 7, 2012

No news on Tucker’s eyes today.

The eye doctor was unable to come by yesterday (Tuesday) evening, so the timeline for potential laser surgery got pushed back by one day. He will now come by tonight to look at Tucker’s eyes and determine whether he wants to do surgery on Thursday evening instead.

In other news, Tucker is now 7.25 lbs! He has also come down on his oxygen requirements the last 24 hours (back down in the 50% range) on his nasal cannula, so we are excited about that.

Plans are continuing to solidify for Boston. We are less than three weeks away from departure on November 26th. Amazing to think how far this little guy has come.

Jesus gets the glory.


Sunday, November 4, 2012

We have a little bit of sad news tonight.

The ophthalmologist who has been checking Tucker’s eyes weekly for ROP came by this afternoon to examine Tucker’s eyes and let us know that his ROP has progressed to Stage III, which means he likely will need laser surgery this week to prevent the disease from getting any worse.

ROP stands for Retinopathy of Prematurity, and it is a complication for Tucker related to his being born at only 25 weeks and 5 days. In ROP, new abnormal blood vessels grow at the edge of the normal blood vessels supplying the retina and can form a ridge of scar tissue that may pull on the retina and damage it.

Preemies born at less than 28 weeks of gestation are the babies mainly at risk, and roughly 90 percent of babies at Tucker’s birth weight develop some ROP.

ROP was a bullet we thought that we had “dodged” when Tucker’s initial eye exam indicated no signs of ROP, but apparently the disease can progress over time.

There are five stages of ROP, with one being mild and five being severe. Three, in Tucker’s case, is likely cause for intervention.

The typical treatment is laser therapy, which is often performed right in the nursery at the baby’s bedside. With the same type of instrument the ophthalmologist uses to examine a baby’s eyes, he can deliver a laser beam directly to the retina to arrest the growth of abnormal blood vessels and scar tissue.

The long-term effect of ROP on a baby’s vision depends on whether the illness caused permanent damage to the eye, which is why intervention is crucial.

Obviously, this was hard news for Tommy and I to hear – given everything else Tucker has to face, we had hoped eye surgery wouldn’t be added to the list. There are some serious risks associated with ROP if it does progress to Stage 4 or 5.

We are praying hard for Tucker’s eyes – that the ROP won’t progress, and that when the ophthalmologist returns on Wednesday to do another exam, if he decides to move forward with the laser surgery that the surgery will prevent the ROP from progressing any further.

Friday, November 2, 2012

Happy Friday! A very talented photographer / friend, Kyle Laferriere, asked if he could follow our family’s journey until we bring Tucker home.

He just posted his first set of images on his blog yesterday. For a little taste of Kyle’s images, check out the photo below and be sure to check out the November 1st post on his blog:

Thursday, November 1, 2012

I cannot believe it is November. Sometimes I feel like time stands still when you have a child in the NICU.

Tucker-man is doing well and gaining weight like a champ. As of last night, he weighs 6 lbs 10 ounces, so getting closer to the 7 lb mark. (They want him to be about 7.5 lbs for surgery, so I think we’ll be there by November 26th).

Respiration-wise, we’ve back-pedaled a little bit over the last four days. Tucker is still on a high-flow nasal cannula, but is now on five liters vs. four liters (which is the highest you can go before going back on CPAP).

His oxygen has also been up from 60 – 75%, where he was in the 50% range his first week on the cannula.

His doctor is doing everything he can not to have to put Tucker back on CPAP. He changed his every other day course of Lasiks (a diuretic that helps Tucker pee fluid off of his lungs) to a daily, “maintenance” course.

He also took his feedings down a little bit to see if we can reduce some fluid that way. Please pray for continued respiratory improvement, and that Tucker can come back down on his respiratory requirements on his own.

Plans are continuing to come together for Boston. We are still waiting to hear about the details of the actual transfer itself. Our case manager is working with Boston to secure an air ambulance for transport, and after that is solidified, Tommy and I will know where or not one of us can ride with Tucker during the actual transfer.

A few people have asked if we need a place to stay in Boston. A really sweet family in S. Hamilton offered us their basement apartment for the duration of Tucker’s stay, which we are so grateful for!

Still, we are appreciative of “friend connections” if you want to pass them along our way. :)

Tuesday, October 30, 2012

In the words of Tucker’s auntie Allison, “We’re really doin’ it.”

Big news today – we received Tucker’s official date of transfer to Boston Children’s Hospital.

  • Tucker will be transferred from Richmond to Boston via air ambulance on Monday, November 26th (right after Thanksgiving weekend).
  • His first surgery to begin the growth induction part of his esophagus repair will take place on Thursday, November 29th.
One encouragement we learned today was that Boston considers Tucker on a faster timetable for his repair since he has not had any prior surgeries attempted on his esophagus. They estimate he will be in Boston for about two months since he has a “virgin esophagus.”
We are praying that this is the case (this would put Tucker home in Richmond end of January/early February). We are also trying to remain realistic and know that complications could arise. We are trusting and believing that God is holding Tucker close and that His timing for Tucker is perfect.
More details to come in a later update, but we are excited!
Friday, October 26, 2012

Update on Tucker’s weight since I don’t think we’ve given one in a while – Tucker weighs 6 lbs 3 oz. Hooray!

He is looking and acting more like a full-term/newborn baby all the time. Sucking on his fingers, enjoying his pacifier, getting mad when we change his diaper.

Although Tucker can’t eat orally yet, his doctors are able to give him “full feeds” through his G-tube, which right now is 50 mL (about 1.7 oz) every three hours of 28 calorie food. (Typical breastmilk is 20 calories, but they are beefing up Tucker’s to help him put on weight).

We like to say that Tucker is on a “creamer” diet rather than 2% milk.

Respiratory-wise, the last 48 hours haven’t been that great. His oxygen requirements have been a little bit up on the cannula, and he’s had more frequent desats. We are praying for continued respiratory improvement and healthy lungs!

Ellie connected with Boston on Wednesday and they are still working on getting us an official transfer date with plans for transport. We are crossing our fingers that Tucker’s transfer will take place the first or second week of November.

Boston asked if we would like to come before or after the holidays and we said we are eager to come as soon as possible, because for us – the longer Tucker waits to go to Boston, the further back our timeline is pushed for getting him home.

Please pray for continued growth for Tucker, and a date on the calendar SOON!

We mentioned last week that we were actively praying for a way for one or both of us to be in Boston with Tucker the entire time he is up there.

We found a way, albeit not what we hoped or prayed for, but Ellie put in her three weeks notice at the YMCA on Monday.

This was a decision that was really tough for Ellie given how much she loves the Y and the fact that her resignation also means our family losing her income; however, this will allow Ellie to focus all her energy on Tucker.

Tuesday, October 23, 2012

On Sunday, we celebrated Tucker’s official “due-date” by dressing him up in a little party hat and putting him on top of a plastic birthday table cloth that we layed on top of his crib.

Nothing says party like a little birthday tchotchke from Target. To see photos of Tucker dressed up on his “birth-day” click here.

In all seriousness, Sunday was kind of a bittersweet day for us. We are so very thankful for Tucker and his life – and the incredible miracles we have encountered through our son.

At the same time, it was a reminder for us of what was “supposed to be,” especially as several other sweet friends who were due right around us gave birth to their beautiful full-term babies. We were overjoyed for them, but a little sad for us and for Tucker.

We may not ever know why Tucker came as early as he did, but we continue to trust that it was apart of the Lord’s divine plan for Tucker’s life. Thanks for all the ways you’ve supported our family and loved our child during his “first three months.”

Friday, October, 19, 2012

Happy Friday!

Thursday, October 18, 2012

Hey Ma, Look – no headgear!

Tucker came off CPAP yesterday. Woot-woot. He’s now on what’s called a high-flow nasal cannula, which still can deliver some pressure and oxygen through his nose – but is a lower level of respiratory support than the CPAP.

To check out some more photos of his sweet face, click here.

Monday, October 15, 2012

Well, I think it’s safe to say that Tucker’s first Christmas will likely be a white one.

Some time in November (early to mid-November), Tucker will be transferred to the Esophageal Atresia Treatment Center out of Boston Children’s Hospital for a 2-4 month stay to repair his esophagus (November – January/February).

About six weeks ago, we began researching and networking with other EA/TEF families to find the centers that see Tucker’s birth defect the most often, and the different treatment plans that those centers offer.

We love our local surgeon group, but the more we have read about esophageal atresia, the more we’ve realized that this is a birth defect that can have life-long complications depending upon how it is treated. It’s your child’s ability to eat.

Boston, Cincinnati, and Minnesota are the centers that treat children with EA/TEF frequently. We began actively communicating with two of those centers in August.

About a week and half ago, Ellie sat down with our local surgeon to talk about his plan for surgery in Richmond, and he asked Ellie about Boston’s plan for Tucker’s esophagus repair. At the end of a great conversation, he said, “You should go to Boston” and that they couldn’t compete with “that kind of esophageal experience.”

So after a lot of prayer and consideration (and a very straightforward recommendation from our local surgeon), we are Boston-bound.

A few prayers as we prepare for this new adventure:

  • That Tucker would grow and put on weight. He has to be about 7.7 lbs (3.5kg) before we transfer him. He is currently 5.5 lbs, and his weight gain has slowed now that he is on CPAP (and working harder to breathe). Doctor’s estimate that he will be at this weight and ready for transfer in about one month (early to mid-November).
  • That Tucker’s respiratory status would continue to improve and his lungs would heal from being on the ventilator for so long.
  • That the Lord will provide a way for Ellie and/or Tommy to be up in Boston full-time for the first couple of months of Tucker’s stay.
  • That the Lord will provide solid, excited volunteers (especially a female or two) to lead Young Life at HHS so that Tommy, Ellie, and David have some support as they think what these months ahead will look like for ministry.
  • That we won’t max out our 2 million dollar annual insurance cap before December 31, 2012. Estimated charges from Tucker’s three and a half month stay in Richmond = $1.6 million. There’s a decent probability we will exceed that cap before the end of the calendar year with Tucker’s continued medical needs.

This cute guy truly is going to be a “million dollar baby.” Thanks for continuing to pray for our family!

Thursday, October 11, 2012

Good week for Tucker-man. It has been relatively uneventful. Tucker is still on CPAP, and they are slowly weaning his pressures to move him towards a nasal cannula.

One thing we could use prayer for right now is growth and daily weight gain.

There are not any procedures or surgeries scheduled for Tucker over the next 3-4 weeks because Tucker needs to hit a certain weight (7 lbs, 11 ounces) before the process to grow and repair his esophagus can begin.

He’s about 5 lbs 8 ounces now, and his doctors project that he should be growing about an ounce a day. Pray for steady, healthy weight gain that gets Tucker prepared for the next step.

Sunday, October 7, 2012

Great Weekend! We got rid of his PICC line….so Tucker can now wear PANTS!….check out the recent pics. He’s up to 45ml on his feedings + fortifier (extra calories). And they’ve lowered his pressures down to a PEEP of 7. Another fun milestone is….we tried him out in a bouncy seat that some friends bought for us! He’s a big boy!

Friday, October 5, 2012

Tucker’s a happy boy on CPAP! He’s had a great couple days.

They’ve slowly been able to ween his oxygen percentages but have kept his pressure pretty high with a PEEP of 8. His blood gases have been great and the plan would be to slowly come down on his pressures as his gases and oxygen requirements allow.

After CPAP, Tucker can graduate to a nasal cannula for respiratory support (this is the least invasive form and is simply tubes that run along his cheeks and then through nasal prongs).

When he switches to a nasal cannula, his nurses said that his replogle tube can be taken out of his mouth and ran through his nose (that’ll be exciting since it’ll be the first time that he won’t have something consistently in his mouth). And his latest trick is he has figured out how to “tongue” his replogle tube out. In the meantime, they keep it taped to his chin.

G-tube. We forgot to mention that in addition to the fluoroscopy on Monday, the surgeon replaced his g-tube with a bigger/newer g-tube…it’s a Mic-Key tube.

Basically, Tucker gets all of his food through a port into his stomach until the top part of his esophagus is connected to the bottom part.

Even after the big surgery to connect his esophagus together he’ll likely need to continue to get either full feedings or supplemental feedings through his g-tube for a while (maybe several years). So, the Mic-Key tube can be easily switched out (very soon) to a Mic-Key button which is a sweet low-profile feeding tube that sits at skin level. This will make it easier to put onesies on Tucker, hold him, move him around, etc.

Speaking of feeding, Tucker is up to his new max of 40 mL of milk every 3 hours! His TPN and lipids are down to a minimum and we hope to stop them completely so that we can take out his PICC line, which has been in his right ankle for over 2 months. We’re excited to have one less line connected to him!

Timeline? The basic answer is….we have no idea when Tucker will come home.

There are probably other requirements that need to be met but the big ones that we understand are that his respiration needs to improve to the point where he is breathing room air on his own and his esophagus needs to be connected together (the big surgery).

  • As stated, he is making some great progress in regards to respiration.
  • For his big surgery, he needs to grow more. They would like for him to be closer to full-term weight (7.5-8lbs). My calculations would guess that he would be that big by the beginning of November.
  • Once he’s that large, surgeons will have a better sense of what method they would like to use to connect his esophagus.
  • At that point Ellie and I will have to choose which surgeon/method/hospital we feel is best for our little man.
  • Each method of esophageal repair has it’s own timeline, but for now, we are anticipating an additional 2-4 months for the surgical procedure, room for potential complications after surgery, and then additional follow-up before discharge.
  • That would put Tucker coming home as early as January 1st :) …..or possibly into March :(

All that being said….we have a long road ahead. We know that Tucker is full of surprises so we are praying for the Lord to astonish us with an even quicker road to recovery.

Radial Aplasia. Quick side note about something we rarely focus on…Tucker’s right arm. They have been splinting it lately (6 hours on, 6 hours off) to help relieve some of that constant pressure on his tendons, joints, and skin.

This won’t correct it by any means but will make recovery after surgery quicker. Can his arm be fixed? When will that happen? How?

We don’t know the specifics on this yet….because it’s not something that can really be performed til his at least 1 years old….and in his case it’ll probably be based on adjusted age….so we won’t be doing anything until October 2013. Most likely we will be flying to Chicago for this one!

Wednesday, October 3, 2012

As of this morning, we are back on CPAP and off the ventilator. In the words of Flava Flav, “Yeah, boi!”

They extubated Tucker this time, he didn’t self-extubate. According to his neonatologist who I just spoke with on the phone, Tucker is a “very happy boy” to be off the ventilator.

Wouldn’t you want to have a tube out of your throat? Poor dude.

So far, no episodes of bradycardia or apnea like Monday night – I say that conservatively knowing that Tucker is unpredictable.

Please pray that the transition back to CPAP will be smooth today.

Pray also for the swelling and edema in Tucker’s throat to go down. Apparently after a baby has been on the ventilator for a while, there is some swelling in his throat – if the swelling gets to the point where Tucker’s ability to breathe on his own is compromised, we may need to consider doing a short pulse of steroids to reduce the inflammation.

I spent a couple of hours last night reading stories of other EA kids like Tucker. It was comforting to read stories similar to our own, but also hard seeing the length their journeys.

I am realizing Tucker’s esophageal atresia is not as simple of a fix as I thought. Let’s start praying now for the best possible long-term outcomes for Tucker-man.

We are continuing to consult with our local surgeon and the other top two EA/TEF surgeons in the country about Tucker’s course. Hoping the research skills that I acquired through my liberal arts degree are going to pay off big for our little dude.

Tuesday, October 2, 2012
Its 5 am and I am still at the hospital after a rough night with Tucker, post-op. I actually never went home last night – Tucker was so labile and unstable.

He is back on the ventilator and I am not sure the doctors are eager to extubate him anytime soon. Around 8 pm Monday night, Tucker self-extubated again.

The doctor attempted to put him back on CPAP. He was doing fine on CPAP (holding the same oxygen requirements as the weekend) but he was on such heavy meds from the endoscopy that he kept having bouts of apnea (stopped breathing) to the point where the doctor made the call to re-intubate him at 10 pm because his sats wouldn’t come up.

His nurses are now talking about another course of steroids to get him off the ventilator, which is what we hoped we avoided last week when he self-extubated.

The procedure yesterday didn’t tell us much other than our local surgeon still wants to wait to form a plan until Tucker gets bigger. Our local surgeon was pleased about the length of Tucker’s lower esophagus. He feels that his hand is no longer forced at doing a colon interposition, and that he can grow Tucker’s esophagus to potentially do a primary repair. He didn’t elaborate on his method of growing the esophagus, so we are still somewhat lacking details on a plan of action moving forward.

Monday, October 1, 2012

A few folks have asked about Tucker’s endoscopy this afternoon. It’s scheduled for 1 pm and Tucker will be taken into the Operating Room for this one since he’s now a “big boy” and respiratory stable.

The kicker is they have to re-intubate him for this procedure (blerg!) since he has to be put under general anesthesia. We are praying that his time back on the ventilator is brief and that he is able to be extubated and put back on CPAP fairly quickly.

What will the surgeon be looking for?

  • How long is Tucker’s gap between his upper esophagus and lower esophagus?
  • Will our local surgeons be able to perform a primary repair (meaning join his two esophagus ends without the need for a piece of colon, etc)?
  • Has either end of the esophagus grown since Tucker’s laryngoscopy at the beginning of September?

So this procedure will be mostly exploratory…but it should provide us with some answers in regards to how to move forward.

Check back in later this evening for an update, post-op.

Friday, September 28, 2012

Tucker is off the ventilator.


No steroids. He did it himself. Rock on, baby boy.

For the first time in 11 weeks, he is not dependant on mechanical ventilation to breathe.

“Tucker is in charge” as one of our favorite respiratory therapists told us yesterday. Tucker is doing the work. And he’s doing great!

A quick recap of how this all transpired:

  • I periodically call the NICU throughout my work day to check on Tucker.
  • When I called at 2 pm, Tucker’s nurse told me that he had another x-ray this morning because his x-ray from 48 hours ago indicated his endotrachial (breathing tube) needed to be pushed down a little further.
  • When his doctor looked at his x-ray this morning, she realized he had actually self-extubated at some point Thursday morning because his ET tube was hanging out in the back of his throat.
  • He never desatted or “brady-ed” (dropped his heart rate) but he was essentially breathing around his tube and doing it himself.
  • Instead of re-intubating, the doctor decided to try him on CPAP.

This is a tremendous milestone – something we have been talking about and praying for for weeks. And the fact that Tucker did it, without steroids, on his own – we are overjoyed.

I mentioned CPAP in an earlier post, but if you want a quick explanation, CPAP stands for “continuous positive airway pressure.” What that means is Tucker can receive oxygen and pressure through a nasal canula. It does not supply breaths like the ventilator does, Tucker has to initiate all of those on his own.

And, for the first time in 2.5 months yesterday – we got to hear our child cry. Although hoarse and raspy from being ventilated for so long, Tucker’s crying is music to our ears.

Here’s a few pics below but also feel free to check out some others on Tucker’s Photo Page.

Thursday, September 27, 2012

Tucker has had a decent couple of days. His blood gases have been good and his oxygen has pretty much hung out in the 30s-40s% range.

We are still scheduled for his x-ray down in the OR on Monday, October 1st, so it feels like everything is on hold until that happens.

Tommy and I have asked a couple of times when they are planning to start a course of steroids to extubate, without a definitive answer. The broad answer is sometime next week – the actual day, we still don’t know.

Please pray that Tucker’s lungs continue to improve and that he is prepared for extubation next week. This will be a huge step forward if he can be extubated and stay extubated – it means he will finally be breathing on his own (with the help of a CPAP).

Tucker is growing! Last night (Wednesday night) he was 5 lbs 6 ounces. Some of that can be attributed to edema, but since the majority of his nutrition now comes from real food, we do believe that there is some legitimate weight gain taking place.

Monday will be a big day for our family in regards to establishing a plan for moving forward with Tucker’s esophagus repair. Our hope is that our once our local surgeon team examines the length between his upper esophagus and lower esophagus ends, they will make a recommendation from there.

To understand some the different techniques used to perform this kind of esophagus repair, click here. (Tucker has a pure, long gap esophageal atresia so scroll down for info specific to him).

Until Monday, we wait and continue to pray for discernment.

Monday, September 24, 2012

Tucker had a fairly smooth weekend. He is currently on a general antibiotic for a staph infection in the back of his throat (apparently that’s not uncommon for intubated babies)…he started having more secretions out of his endotrachial tube last week than usual, which tipped his nurse off to have some cultures run.

Have I mentioned we love Tucker’s nurses? I will cry the day we leave the NICU for the sole reason that we will be leaving his nurse mommies.

Other than that, his doctors are continuing to ween his ventilator settings and oxygen requirements. Dare I say it, it finally feels like extubation is in sight.

Tucker is almost up to his “full feeds” maximum through his G-tube. The goal is for him to receive 30 mL every three hours, and he is currently at 23 mL. Once he hits the goal level, he will receive nutrition through his G-tube alone and we can say good-bye to his TPN and lipids.

(Over the last few weeks, they have been increasing his g-tube feeds and tapering his TPN and lipids).

He hit the official 5 lb mark Friday night. He is now 5 lbs 2 ounces. Woot! Here’s the little man this morning in his owl hat from his Grandad. Thanks, Grandad!

Thursday, September 20, 2012

Update on Tucker….he is having a pretty good week. On Monday afternoon, Tucker was moved into a “big boy” open crib – which is a big milestone and indicator of how much he has grown. We are right under the 5 lb mark and he has tripled his weight since birth. In regards to his ventilator, he is very slowly coming down on his pressures. Although he is on the lowest pressure setting he has ever been on, he still needs to come down further before they extubate. The neonatologists are hoping to do a “planned extubation” in 2-3 weeks after a course of steroids to get him off the ventilator and into a CPAP. (That said, if he were to pull his ventilator tube out early or self-extubate, they would try him on a CPAP now). His local surgeon group has scheduled another important study for Monday, October 1st to specifically look at his esophageal atresia. They will sedate Tucker and measure the length of his gap – to determine a course of action for how to connect his two esophagus ends. For more on a long-gap esophageal atresia, click here. A few prayer requests:

  • Tucker’s most recent retina examination indicated a Level 1 ROP. This is not unusual given the high levels of oxygen he has required in the past, but certainly we do not want it to progress. Pray that his ROP regresses, and there is no need for laser surgery down the road.
  • Pray for Tucker’s lungs to improve and for readiness for extubation.
  • Pray for discernment and wisdom for his medical team in regards to how to proceed with an esophagus repair.
  • Pray for Tommy and I as we consider all of our options for Tucker in regards to his esophagus repair…and the best long-term outcomes.

Here are a few photos from yesterday (Wednesday) of Tucker in his big-boy crib.

Tuesday, September 18, 2012

No news is good news. Tucker has been doing pretty well. An exciting milestone happened yesterday – Tucker is now big enough to move out of his plastic house into an open “big baby” crib. Check back later tonight for pictures of Tucker in his new bed wearing his cute new pumpkin hat.

Friday, September 14, 2012


Wednesday, September 12, 2012

Tucker is having an okay day today. Not as great as Tuesday, or Monday. He’s had a couple more bronchospasms today, which we haven’t seen him do since Friday of last week. Bronchospasms are sudden episodes where you can’t see his chest rise and he drops his heartrate and his oxygen saturation. It’s relatively common to preemies with respiratory issues, and something that they outgrow…just not so fun to watch because often times his nurse has to jump in and intervene by bagging him. Tommy and I still wonder if his little microaspirations trigger the bronchospasms. His oxygen requirements are still 46 – 50% and his ventilator pressures are still relatively low for him….just apparently likes to play possum with his nurses every once in a while and drop his sats. Here’s the wild child himself in some adorable new JMU socks that our sweet high school friend Abby bought for him. Go Dukes!

Tuesday, September 11, 2012

If you read Friday’s post, you’ll remember that Tucker had a laryngoscopy scheduled for yesterday (Monday) afternoon to assess whether he had a laryngeal cleft and/or a fistula in addition to his esophageal atresia.
He was flagged for a laryngeal cleft several weeks ago when his neonatologist had to re-intubate him. She said she saw a second opening down his throat, which surgeons speculated could be a laryngeal cleft.
At 12:45 pm yesterday (before Tucker’s laryngoscopy) the pediatric surgeon came into prepare us for the course ahead if he did indeed observe a cleft and/or a tracheoesophageal fistula on Tucker….a tracheostomy and a spit fistula. It would mean Tucker wouldn’t be able to come off of the ventilator without surgery performed on his airway.
We prepared ourselves for the worst.
At 1:35 pm, the pediatric surgeon came back into our waiting room and said, “No cleft. It’s a pure esophageal atresia.”
We were in disbelief.
The pediatric surgeon showed us a photograph of the inside of Tucker’s throat where a laryngeal cleft would have been if one existed Nothing.
This is incredible news. What this means is as of right now, Tucker doesn’t have to be trached. It means he can come of the ventilator once his lungs improve….and it means the surgeon’s hand is not forced to do a surgery we feared would cause scarring to his airway and create further complications for his big esophageal repair surgery down the road.
The pediatric surgeon did show us a picture of Tucker’s esophagus (or lack thereof) to help us understand the length of his gap. He estimates that Tucker’s gap between where us upper esophagus ends and his lower esophagus begins is about six vertebral bodies long. What this means is we still have a while before any surgical repair or growth procedure can be done to connect Tucker.
In the meantime, his secretions and spit from his mouth will continue to be suctioned through his replogle tube, and he will be fed through the gastronomy tube the surgeons put into his stomach.
Speaking of growing….Tucker is now 4 lbs 4 ounces. Big enough for preemie clothes! When we walked into the NICU on Sunday, Tucker’s sweet nurse surprised us by dressing him up in a new preemie outfit that our friend Shannon sent to us and a little cap from Grandma Terry.
Here are just a few pics, below:

Friday, September 7, 2012

Tucker has had a few great days; good gases, satted well, and has been resting/sleeping peacefully. The nurses have been doing a great job managing his secretions through the replogle tube. Doctors have been able to lower his pressures on the conventional vent to 27/9 and his oxygen levels have been consistently around the 50% mark. Bottom line, his lungs are improving…..let’s keep praying!
Surgeons have a bronchoscopy scheduled for Monday. This is a procedure that puts a scope with a fiberoptic viewer down into his lungs to get a look at what’s going on down there. Doctors have speculated that he has a laryngeal cleft (Ellie and I think it might be a high proximal fistula) and this will help confirm/diagnose what’s going to be needed next. We haven’t talked to the surgeons directly yet, but we are pretty sure that he’ll need to be put under anesthesia for this so please be praying now that this all goes well and we get some answers to the questions that have been on all of our minds for quite a while now.

Wednesday, September 5, 2012

Doctors and nurses are still making some tweaks and adjustments for managing his secretions through the replogle tube. This tiny piece of apparatus is so crucial to his lung maturity. At this point, we’re not sure how we feel about these changes but Tucker is doing well and the latest x-ray showed improvement. Please pray hard for God to give wisdom to all the doctors, nurses, and surgeons to best care for our man.

On an encouraging note, Tucker’s head scan of his brain came back normal. Woot! Here’s Tucker with his new monkey wubbanub that came in the mail from Grandma Terry. Thanks, Grandma.

Tuesday, September 4, 2012

As we mentioned last week, Tucker’s replogle tube prevents him from aspirating secretions from his mouth and his esophageal pouch into his lungs.

For the first six weeks of his life, Tucker’s nurses and doctors shared that they weren’t getting anything from his replogle tube or when they suctioned his endotrachial tube. We believed that this was normal.

Nurses were surprised by the amount of secretions coming out of his mouth yet even more baffled that nothing was suctioned out of his replogle tube. The reality is, that it is very possible that the secretions that should have been getting sucked out of the replogle tube have instead been going into Tuckers lungs making respiratory improvement next to impossible.

To put it bluntly, he has been drowning in his own spit on top of typical premature lung issues. This kid is made of tough, tough stuff. The thing about Tucker’s replogle tube is that it isn’t just something that needs to be suctioned and unclogged once. It has to be unclogged and flushed constantly. His nurse over the weekend, by her own initiative, spent hours after her shift researching case studies and medical journals to find a protocol for how to care for a baby who requires a replogle tube for a prolonged period of time before he is ready for a larger surgery.

What she found is that this requires aggressive maintenance, on a specific type of suction, with a specific protocol about how often to flush his replogle tube, when to change it out to another fresh tube, etc. The impact her new protocol had on Tucker’s respiratory status was evident.

Tucker’s oxygen requirements dropped down to 25% yesterday, which is the lowest we’ve seen them since his first “honeymoon” week as a preemie. She has been pulling “chunks” of spit and secretions out of his endotrachial tube (the tube that goes to his lungs). Tucker was able to go back on the Drager (conventional ventilator) and off of the high frequency vent yesterday.

They are now doing chest PT on Tucker to continue to work some of this fluid out of his lungs.

Praise the Lord for new, effective protocol. Praise the Lord for a nurse who took it upon herself to find out the best care for this specific issue. The stressful part for us is that Tucker’s management of his secretions truly is contigent upon the nurses and doctors who are caring for him.

In other news….

  • Tucker began getting milk through his G-tube yesterday after two days of Pedialite to “prime his gut” for real food. They are starting slow with only a tiny amount of milk every four hours, but they will observe Tuckers abdomen and continue to increase the feeding amount as he tolerates it.
  • Tucker had an ROP (Reinopathy of Prematurity) exam last Friday to check whether or not there was any damage to his retinas. The eye doctor said Tucker had little to no risk of ROP, which was HUGE given the high levels of oxygen he was on last week. The eye doctor also mentioned that ROP has a lot to due with how developed the eyes were at the gestational age the baby was delivered.
  • Tucker has a rountine head scan today to check brain tissue and growth. Praying hard that this checks out normal.
  • Tucker’s weight is now 3 lbs, 7 ounces.

We are asking for prayer specifically around the medical care for Tucker’s replogle tube and his secretions. Continued aspirations into his lungs could send us backwards. Please also pray for a “normal” brain scan today. That everything is growing as it should at the rate it should. Finally, please pray for us as parents as we consider the best long-term and surgical care for Tucker.

For those of you who have children, you know what it means to feel like you will do anything and go anywhere to ensure the best possible prognosis for your child.

Thursday, August 30, 2012

Here’s the readers digest version of the last couple days. All day Monday and Tuesday, Tucker remained at 100% oxygen, increased pressures, and yet still very large/long desats. It felt as if we were at a loss of ideas of how to best care for Tucker.

We once again were faced with the possibility of using another pulse of steroids to give him a boost to overcome these high levels. It was about this time that one of surgeons and one of our nurses discovered the biggest medical breakthrough for Tucker’s health to date. They discovered that his replogle tube (the tube that goes into his esophageal pouch and sucks out secretions/spit) had been clogging and continues to clog.

This in addition to a possible laryngeal cleft or fistula may have been causing him to aspirate (get fluid into his lungs) this entire time. Immediately after unclogging this tube and keeping it unclogged his stats improved. He was also weened down to 60% oxygen in a short amount of time.

He had been stuck at 100% for almost 48 hours and a simple tube produced immediate results. In addition to heavier management of aspirations, he has also been put back onto the jet, is on a 5 day pulse of steroids, is on a fentanyl (sedative) drip to help him relax on the jet, and doctors/surgeons are hoping to test out his g-tube as soon as he’s stable to get him some milk.

So once again it feels like we’re are throwing everything possible at him to see some progress…only this time he hopefully won’t be aspirating.

This could be his turning point, so please be praying for radical respiration improvement. Pray that he doesn’t aspirate, that he’s able to get some milk into his stomach, and pray that his lungs heal.

Monday, August 27, 2012

Well… almost feels like we are right back to where we started last week. Within the last 24 hours or so, Tucker has notched his way back up to his oxygen levels being consistently near 100% and his pressure has been increased by one. His chest x-ray today is showing….you guessed it…more haziness.
His ventilator leak is also at a consistent 100%. We’re not really sure what the next step will be or what the cause of this all could be. It’s possible he has/had pneumonia and his body is still recovering with the help of antibiotics. It’s possible that the unconfirmed laryngeal cleft (or fistula) is going to need to be addressed sooner rather than later. Or it’s possible that he just has sucky lungs and is in need of some more prayer (and steroids).
Praying for God to show up in some big ways and drastically improve his breathing and heal/mature his lungs.
He always looks content and is continuously growing (check out the pictures here to see for yourself) but we long to see the day when he no longer needs the ventilator.

Saturday, August 25, 2012

Over the last 24 hours, we have received countless texts and Facebook messages from people praying for Tucker. Thank you – they are what carry us through difficult days like yesterday. And those prayers worked! We are in such a better place than we were this time yesterday morning.

For the first time in 48 hours, I feel like I can breathe. Yesterday, I desperately prayed all morning, “please let us turn some kind of corner here.” The neonatologist tossed out the words “emergency steroids” yesterday morning if things didn’t improve.

At 3 pm, right before the doctor came back yesterday afternoon to ask our permission to use them, Tucker’s oxygen requirements dropped to 55 percent and held steady.

Tucker is now off of the jet vent and back on the conventional Drager vent as of about 5 am this morning. His oxygen requirements are back down 50% – 60% (down from a very scary 90 – 100%) yesterday morning. He has had two good blood gases, this morning.

And get ready for it…..HE IS 3 POUNDS 3 OUNCES! (after several doses of Lasix to reduce water retention, so we know this is legitimate). Tucker man still has a long way to go respiration wise.

He’s at some of the highest pressures and oxygen levels that we’ve seen him settled at but at least we’re not backed into a corner. For now we take a sigh of relief and keep praying for a restful recovery for the rest of this weekend. Thanks again for all of YOUR prayers.

Friday, August 24, 2012

I am sitting in a yellow isolation gown next to Tucker’s isolette this morning listening to the jet vent ring off because Tucker isnt consistently meeting his pressures.

His oxygen requirements are sitting at 76 percent, which is the lowest I’ve seen in the last 36 hours. Typically Tucker’s oxygen sits anywhere between 38 and 55 percent.

Yesterday he was at 100 and still requiring additional (manual breaths). I’m in an isolation gown because the doctors think Tucker has some sort of infection, their best guess is pnemonia…because Tucker has some type of fistula, they think he could have aspirated into his lungs.

Even though I rarely get to hold him, I know my child well enough now to know he is sick. His nurse gave him a sedative this morning to help him tolerate the jet. He has had two blood transfusions and is on two different antibiotics to help with infection.

This week, especially the last 36 hours, have been tremendously hard for us. I told my friend Susan that this week has felt like we are caught in a heavy undertoe, unable to tell what direction is up and how to gain footing again.

Please pray for our spirits and for Tucker. For me personally, this has been our hardest week in the NICU, and such a difficult week to start back at work full time.

Pray that Tucker starts to recover today and that the doctors are able to lower his vent settings.

Staying on the oxygen requirements that Tucker is on for days at a time puts Tucker at a substantially greater risk for (rop) Retinopathy of Prematurity. Not to mention it’s a big step backwards in getting Tucker extubated and off the vent.

We are weary and we are clinging to Jesus.

Thursday, August 23, 2012

We are having a rough go this week.

Tucker’s oxygen settings on his ventilator have doubled over the last 36 hours – I have never seen his oxygen requirements this high for this long.

He has been dropping his oxygen saturation levels more frequently, preventing his nurses from weaning down his ventilator settings as they typically would.

The doctors finally made the decision this morning to put Tucker back on the high-frequency (jet ventilator), because his oxygen requirements have stayed so high and they want to increase his pressures.

It feels like a step backwards. He hasn’t needed the jet vent since before his surgery 10 days ago. Doctors are trying to figure out what is causing such a sudden heavy dependency on the ventilator.

They ran some cultures to check for infection (we still don’t have the results from those yet), and they went ahead and put Tucker on a round of antibiotics just to stay ahead of the game. This could also be the result of Tucker rebounding from his steroid treatment last weekend. We’re not entirely sure.

Today is the day the surgeon is supposed to come back by to run another dye test and make sure Tucker’s Gtube is still working correctly so that they can proceed with starting small feeds. At this point, given how unstable his respiration is, we don’t know whether this will happen or it will be put on the back burner until they can lower his need for respiratory support and get him more stable.

One step forward, two steps back. So it goes.

Tuesday, August 21, 2012

My first day back at work started with a bang and phonecall from Tucker’s nurse that he had extubated in the early hours of Monday morning because of a plug in his endotrachial tube. To which I responded, “Holy crap? Again?!”

The neonatalogist decided to see how Tucker would do on a CPAP ( CPAP is a breathing treatment that uses mild air pressure to keep the airways open and provides oxygen) but it requires a baby to breathe on his own. It’s the next step after extubation.

Tucker did fine on CPAP for about three hours, but the neonatologist and Tucker’s nurse felt like he was still having to work too hard to stay on it for the duration, so they reintubated him around 7:30 Monday morning.

Here’s the little man on a CPAP: Apparently he kept sneezing and wasn’t sure what to do with all of the air pressure blowing through his nose. We think he looks like a little piggy.

One thing the neonatologist did notice when she reintubated Tucker Monday morning was another opening – some sort of fistula, or what the surgeons are suggesting might be a laryngeal cleft.

Laryngeal clefts typically go hand in hand with esophageal atresias, but they are rare. At this point, the doctors aren’t confirming either way…but it could explain Tucker’s constant leak in his endotrachial tube. Tommy and I were both a little rattled to have a new potential birth defect added to our vocabulary.

“Esophageal atresia” and “radial aplasia” are two medical terms we became familiar with well before Tucker was born, but this felt like a punch in the gutt and “one more thing” to add to his list in terms of surgeries down the road.

If Tucker truly has a larnygeal cleft paired with an esophageal atresia, it could class him into a couple of other different syndromes (other than VACTERL Association) with other added complications and things to worry about.

I think at this point, I would rather him have a fistula because with that anomaly we have a better handle on what that could mean…but the reality is, geneticists won’t make a diagnosis on Tucker until he is bigger and we really can see what’s going on.

So we continue to hang in there. Tucker had a relatively quiet day after all of the hoopla yesterday morning. He did get a blood transfusion yesterday afternoon and his nurse had to stick him five times before she got the needle in his vein. Poor guy.

Apparently he does great with needles though (just wish he didn’t have to come in contact with them at all).

We are praying for a quiet day today, and for continued wisdom for the doctors and surgeons who are caring for him.

Happy day, I did get to hold him last night for about an hour while his nurses were changing his isolette.

Saturday, August 18, 2012

Tucker has been doing relatively well since Thursday. We have a love-hate relationships with his steroids. They do great things for Tucker’s lungs (they are anti-inflammatory and have almost an immediate affect on his respiration). But man do they make us nervous.

We are praying hard for wisdom and guidance for the neonatologists who use them. Tucker is still ventilating with a 90 – 100% leak in his endotrachial tube (breathing tube).

Imagine trying to breathe through a leaky straw.

The doctors don’t want to put a larger size breathing tube in Tucker for fear of damaging his vocal cords, so at this point we’re rolling with the leak.

Honestly, Tommy and I feel like we can’t get this child extubated and off the vent fast enough.

The pediatric surgeon came by to check Tucker’s gastronomy tube site yesterday (Friday) afternoon and was thrilled by how it looks. He injected some pink dye into Tucker’s g-tube so that he could watch it move through Tucker’s intestines and check for leakage or blockage – nothing. Phew.

The surgeon said, “this is the best news. I am going to drink a beer to that.”

So Tucker’s nurse brought the surgeon a beer this morning as a joke. Apparently this man is not easily rattled, and him getting excited about something is a big deal.

The surgeon wants to wait until next Thursday to feed Tucker through the g-tube to let things heal and set up a little further.

Periodically, the respiratory team and Tucker’s nurse change his ET tube holder, so I snapped some pictures of his little mouth. I feel like we are revealing the man behind the mask after five weeks!

The nurses joke about what cute little “apple cheeks” Tucker has. Fun to see some fat starting to accumulate on that boy. We are getting closer to the 3 lb mark!

Thursday, August 16, 2012

Annnnnnd the roller coaster ride continues.

Here we go… Tucker had two and a half great days post-op of recovery with beautiful blood gases, lower vent settings, and few de-sats.

Then, last night we took another nose dive, Tucker turned white, dropped his heart rate and had a scary, low de-sat (right in front of his grandparents – yikes, Tucker!) I guess at least this time I was prepared for it, but I still feel bad for my folks.

Sorry, Mom and Dad. Wasn’t planning to have you watch your grandkid get bagged last night when you came to visit.

Tucker had to be bagged not once – but five times last night. I’m pretty sure that I didn’t sleep after I left the NICU.

And not surprisingly, he had a crappy chest x-ray this morning and a semi-crappy blood gas at 12 pm today.

I have spent most of today at the NICU and Tucker has pretty much been labile since 8 pm last night.

I asked Tucker’s nurse and the neonatologist what the deal is and they said it’s a combination of Tucker rebounding from his first pulse of steroids, plus babies often tend to do poorly after a PDA ligation surgery and it can take up to a week for them to recover and their bodies to adjust.

Apparently, this is “normal.” (Side bar….nothing about having a kid in the NICU is normal. Thanks though, doc).

Those two factors are contributing to his nose dive, on top of the factor that Tucker has a big fat 90 – 100% leak in his endotrachial tube.

As long as Tucker is respirating well and his blood gases are good, the neonatologists are okay to let his leak ride.

Still, this leak is disconcerting for Tommy and me. Tommy and I frequently ask the doctors and nurses whether they think Tucker has a fistula with his esophageal atresia. Eighty percent of esophageal atresia cases have some kind of fistula (typically into the lungs), but Tucker’s surgeons and his neos keep saying that they think Tucker has a pure atresia based on what they’ve seen of his anatomy so far. So here’s where we are as of this afternoon.

  • The neonatologist started Tucker on another pulse of steroids (while I cursed under my breath and prayed again that the Lord will protect Tucker’s brain).
  • If Tucker has another poor blood gas at 6 pm tonight, they will put him back on the jet vent.
  • The surgeon came by and wants to start Tucker on a small feeding through his g-tube tomorrow. Of course that will entirely depend on how he’s respirating. (Yes, my eyes did just roll).
Please continue to pray for Tucker’s lungs. We are so eager for stability and improvement that is consistent.
And please pray also for the introduction of real food to Tucker’s GI system. Pray that he doesn’t have any blockages in his intestines, or other issues that would cause his body to be unable to digest milk.
Thanks for continuing to love and support our family!

Wednesday, August 15, 2012

Tucker man has been sleeping and recovering the last few days from his surgeries. For the most part, he’s been stable.
G-tube. Since his stomach has never had any food (or even air) in it, the doctors will be slow to introduce nutrients into it. They want to ensure that his whole GI track is functioning properly. We’re hoping that things will heal quickly and that the surgeons will give approval to begin to test things out by the end of the week. Pray that everything is working properly and we can get some milk into ASAP.
Respiration. Prior to little man’s surgery, he had his first round of steroids to help improve his lungs. This had some immediate improvements and they were able to ween him down on both his pressures and o’s. So much so, that they were able to switch him back to the conventional ventilator (drager) just in time for his surgery. He’s remained on this ventilator since the surgery without any adjustments to his settings (other than his FiO2 as needed). All of his gases have been good. After a steroid treatment, it’s common for preemies to “rebound” back close to their original ventilator settings. Pray that Tucker’s “rebound” is very minimal if any.
In the midst of one of our most stressful week, we’ve been reminded of the peace that comes from Jesus Christ. God has intentionally and strategically placed people in our lives to calm our fears and encourage our hearts; generous donations from family, friends, neighbors, and strangers, a plethora of gift cards and notes of encouragement, church members traveling all the way out to our home to take Lyla for a walk, meals being dropped off, and more. We’re so thankful for these people and how they remind of us God’s faithfulness. Thank you for being one of those people who is checking in on Tucker and walking through this journey with us!
Monday, August 13, 2012

Tucker is one month old today and tonight we celebrate two successful surgeries on that tough, sweet boy.

Surgeons did Tucker’s PDA ligation surgery first, then they gave him a g-tube! The surgeon said Tucker did well with both surgeries.

We are especially excited about the gastronomy tube for Tucker because it means he can start receiving real, calorie-dense nutrition. T

he doctors will likely wait until the end of the week for his g-tube site to seal before the beginning feeding him through it…but this is a HUGE step forward in terms of helping Tucker grow.

Thank you for all of the prayers and kind thoughts today – we certainly felt them as we prepared and waited for Tucker to come out of surgery. We are crossing our fingers for a smooth recovery, and hoping he will sleep peacefully and heal over the next several days.

Saturday, August 11, 2012

Some BIG updates on Tucker….the doctors are making moves and we have an eventful four days ahead. This is a long update, but hang in there with us as these are some pretty significant ways in which Tucker will need prayer.

Tommy and I sat down with two neonatologists yesterday and discussed three things:

  • Tucker’s lungs
  • Tucker’s heart
  • Gastronomy tube
Tucker’s lungs. Yesterday, we got the blunt answer to the question we’ve been asking ourselves for the last two weeks (and you probably have been asking also), and that is “are Tucker’s lungs improving?”
The reality is Tucker’s lungs have remained the same with little to no improvement. In short, we’re stagnating. Although we’ve seen a slight change in his oxygen requirements (oxygen requirements in the 30s-40s), his pressure setttings have remained higher than doctors would like. Blood gases have improved but haven’t shown consistency in the range doctors would like.
Doctors want the ability to reduce Tucker’s dependency on the ventilator because the longer Tucker is on the vent, the greater the risk for BPD and lung damage.
Friday afternoon, the doctors started Tucker on a short, three-day course of anti-inflammatory steroids for his lungs. We heard the word “steroids” and my heart dropped. The benefit of steroids is that they work quickly and dramatically, causing a baby’s need for oxygen to go down within 24 hours of the first dose. It is – if effective for Tucker – what could get Tucker extubated and off of the ventilator.
The concern with steroids (as with most things in the NICU) is that there are side affects. Short-term risks are that babies will have a jump in blood sugar or blood pressure, but doctors will monitor Tucker closely for this while he’s on the steroids. The scarier side effect is that while the steroids increase chance of survival, they can affect brain development.
Tucker is on a short, low-dose course (not like the 42 day steroid courses that they did 10 years ago); however , there is still some risk involved. Please, please pray for protection for Tucker’s brain.
Tucker’s heart. Tucker’s PDA is wiiiiiiide open. (Insert angry expletive here). Since doctors have already done two rounds of indomethacin with Tucker to close his PDA, they feel that they need to move forward and close the duct surgically.
Tucker is schedule for a PDA ligation surgery this Monday (August 13th) morning.
A PDA ligation is performed under general anesthesia. Tucker’s surgeon will make a small incision, lift up Tucker’s lung to find the patent ductus, then close it tightly with a stitch or tiny metal clip, neither of which will need to be removed. Within a few weeks after the ductus is closed, it will shrivel and go away, and won’t reopen again.
A PDA ligation surgery has a mortality rate close to zero and is nearly always successful in closing the ductus. Doctors have told us it’s a fairly routine surgery in preemies Tucker’s size. In fact two other of Tucker’s “bunk-mates” are having the PDA ligation surgery on Monday morning.
Tucker’s G-tube. Since Tucker is already scheduled for PDA ligation surgery, there’s a good chance the kid will get a two-fer and the surgeon will also insert a tiny G-tube in Tucker’s stomach so that he can start receiving breast milk. Yay for Tucker!
Since Tucker’s esophagus is not connected to his stomach (it will be connected when Tucker is closer to full-term), Tucker has been receiving food intravenously in the form of TPN and lipids. Fine for the short-term, but not great nutrition for the long-term and it can also have a negative affect on the liver.
If the surgeon feels like he is able on Monday, he will also insert a gastronomy tube in Tucker’s stomach after he does the PDA ligation.
The gastronomy tube will be a short-term fix for Tucker (it will eventually come out after Tucker has the surgery to repair his esophagus) but it’s of great benefit to Tucker because it’s a direct line into his stomach done through a fairly simple procedure. It will boost growth for Tucker and give him good calories, which will in turn help him grow healthier lungs, etc.
If the surgeon is able, they will start breast milk feeds slowly and in small doses, adjusting the ratio of TPN to breast milk as they observe Tucker’s GI system “waking up” and responding to actual food for the first time.
Please pray that the surgeon is able to insert the G-tube and that both of those surgeries go smoothly. Pray especially for brain protection with the steroids. And pray that the steroids do their job and help Tucker’s respiration quickly and effectively without the needs for multiple doses.

Thursday, August 9, 2012

A recap of the last 48 hours for Tucker. Yesterday (Wednesday morning) Tucker had another poor blood gas which led the neonatologist to order another chest x-ray.

His blood gases have been back and forth all week. He’ll have a good one, then he will have a not so great one. The chest x-ray yesterday didn’t look great either, after his poor blood gas.

Not particularly surprising, but Tommy and I were disappointed because his two chest x-rays prior to yesterday’s had shown signs of slight improvement. He did come down a little on his oxygen requirements yesterday which is a good thing, and he had a good blood gas this morning (Thursday morning).

I just talked to his nurse this afternoon and the doctors ordered another echocardiogram. Apparently she and the neonatologist heard a heart murmur which could mean…wah wah….a re-opened PDA. This would be round two of the PDA re-opening. Blegh. We are praying hard that his PDA is still closed and would love for you to join us in praying specifically for that today.

Tuesday, August 7, 2012

Tucker has had an uneventful few days (which is great, we like uneventful).

Clinically, his respiration is slowly beginning to improve. His last two lung x-rays have each been a little better, whereas last week, they showed no improvement.

The amount of oxygen he is requiring from the ventilator is slowly beginning to wean down, too. His blood gases (measure the amount of CO2 his lungs blow off and his pH level) have continued to be up and down but on the whole are better than they were a week and a half ago.

At this point, his lung development has a ways to go, but we seem to be crawling out of the respiratory hole that we’ve been in for the last two weeks.

His current weight is 2 lbs 7 ounces and he is starting to get a little baby chub on his legs. At this point, Tommy and I both have been able to hold Tucker when the nurses changed out his isolate (they do this once a week to ward off germs and prevent infection).

We won’t be able to start kangaroo care until Tucker’s respiration is more stable and he is off of the jet ventilator.

We are also waiting for Tucker’s respiration to stabilize before he can be given a G-tube that would allow him to receive breast milk.

At this point, he is still receiving TPN and lipids intravenously but we are hopeful that he will be able to have breast milk soon.

Please pray for continued lung improvement, protection from infection, brain and heart protection, respiratory stability, and consistently good blood gases. :)

Thursday, August 2, 2012

Tucker’s PDA (patent ductus arteriosus) is closed! Yay. The ductus arteriosus is a blood vessel that allows blood to go around the baby’s lungs before birth. If the PDA were to remain open, it leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels that carry blood from the heart.

Tucker did manage to extubate himself yesterday afternoon – when we came in to visit him, the neonatologist said, “You have one very active baby.”

So for the second time in three weeks, Tucker had to be reintubated. Oh boy. Never a dull moment with this kid.

Tucker’s lungs are still looking hazy as of last night (Wednesday night’s) x-ray. He is still on the jet vent as of this morning.

We are glad that he is tolerating the higher frequency vent, but we would love to start seeing some lung improvement. It’s been five long days of “the same” and we are hopeful for some change. Tucker’s nurse last night told us he weighs 2 pounds 5 ounces now. Keep growing, baby. :)

Wednesday, August 1, 2012

Another fast update on Tucker. He is still on the jet ventilator (24 hours and counting) and seems to be tolerating it well this go round!

The reason the doctors like him being on the high frequency vent is because it provides shorter, softer breaths that allow his lungs to stay “puffed” up.

Currently the adjectives the doctors use to describe Tucker’s lungs are “hazy” or “heavy.” So we’d like his lungs to start looking light and puffy real soon, although we continue to take things one day at a time.

Tucker’s blood gas last night was good, and Tucker’s nurse told me this morning that they are planning to remove his last umbilical line today. Bring on the kangaroo care (not so much the heal sticks). Tucker also has another echocardiogram today to determine whether the indomethacin that he was on (the second round) closed his PDA.

Praying that this is the case so that we can cross this off the list and have one less thing to worry about. If the opening is large, doctors will consider surgery to close it.

Thanks for the continued prayers and encouragement – they are deeply felt by our family.

Tuesday, July 31st, 2012

Quick update on Tucker. The neonatologist decided to put Tucker back on the jet ventilator this morning because his oxygen and pressures have continued to be high. {Sigh}.

Tucker did have a good blood gas this morning though.

Please pray that he tolerates the jet ventilator well. The last two times Tucker has been on the high frequency ventilator, he has done great for a few hours, then he tanked and had to be quickly taken off it it and returned to the conventional ventilator.

The effect is softer on his lungs, so if he can stay on it and stabilize for a couple of weeks so that he can be weaned down, that would be really wonderful. We are also dealing with a substantial leak in Tucker’s endotrachial tube (again).

At this point, the doctors can’t go up on the tube size because Tucker is already on the largest sized tube for his size/weight. They are continuing to reposition him to manage this leak, but it is worrisome and frustrating to watch….not knowing how much oxygen and pressure Tucker is getting, relative to his leak.

Three neonatologists have told us that they don’t think he has a fistula, but Tommy and I would love to know what’s causing the leak this time around.

Yesterday afternoon, Tucker had his pic line put in his ankle (tiny IV line for babies). The doctors held off on this as long as they could to make use of Tucker’s umbilical lines so that they wouldn’t have to poke him. We were nervous about how Tucker would do with the insertion of a needle because he generally does not like to be messed with.

He did great and his nurse said the pic line went right in! Huge relief for us.

The great news about the pic line is it means that once all of Tucker’s umbilical lines are out we can start doing kangaroo care. The bad news is it means that they have to start monitoring Tucker’s blood gases by doing heal sticks. Egh. Poor guy. We are hanging in there but this has been a challenging week. We could certainly use a good day for Tucker (or several).

Sunday, July 29, 2012

There have been two times that I have lost it in the NICU. The first time was the second day after I delivered, when I was still overwhelmed by how small and fragile Tucker looked and how guilty I felt for delivering him early.

The second time was last night when we watched Tucker’s oxygen level drop dangerously low and he started to turn white in the face.

You know you’re in trouble when your child’s nurse plus three other nurses, the respiratory team, and the neonatologist rush over to the isolette in a hushed panic, start cranking up his pressures and ventilator settings and then decide to give him manual breaths by “bagging him.”

The worst part for me was when I looked at his sweet pale white face and he opened his blue eyes – they looked so sad and tired and frightened. It shook me to my core and it broke my heart. It was at that point that I started weeping and I couldn’t stop.

The kind, soft-spoken neonatologist brought me a box of tissues and told me not to worry – that Tucker would be okay, but I felt so desperately sad.

To see pain on your child’s face and feel like a helpless observer stuck on the other side of glass walls – it is torture. I kept thinking, “I still haven’t held him. It’s been fifteen days and I still haven’t held him.”

The bottom line is Tucker’s underdeveloped lungs continue to be an issue. He has had a series of bad blood gases over the last couple of days, so the neonatologist decided to try the high-frequency “jet” vent again Saturday afternoon to see if a faster, “softer” breath would help burn off some of the CO2.

He tolerated it for about four hours and then his body started resisting the machine, and his dangerously slow de-sats were cause for the respiratory team to put him back on the conventional ventilator. Similar to our experience at the beginning of last week.

Once he returned to the conventional ventilator after the jet ventilator, he seemed more happy. The other bit of discouraging news is that Tucker’s PDA in his heart reopened. It’s not uncommon, but it does mean the doctor decided to start another round of the indomethacin today to try to get that vessel closed.

Tucker is also on antibiotics in case he has a lung infection, and he had another blood transfusion today.

Things we need prayer for:

  • Major lung improvement. Better chest x-rays. Improved respiration stability.
  • Growth without being caused by fluid retention
  • Protection from infection
  • That his PDA would close and STAY closed,

Wednesday, July 25, 2012

Tucker is having one of our favorite kind of days – a non eventful, stable day of “hanging out and breathing.” We are praying that this will be the tone of the rest of the week (or next couple of weeks) as Tucker’s lungs continue to develop and his respiration stabilizes. A

brief recap of yesterday – the respiratory team decided to put Tucker on a high-frequency ventilator because his blood gasses continued to be poor.

A high-frequency ventilator delivers 420 breaths per minute (yes, 420!) vs. the typical ventilator which is 45 – 50 breaths per minute.

It’s supposed to deliver a faster, “softer breath” that is less forceful on a premature baby’s lungs. Tucker was NOT a fan of the high-frequency vent.

If we are learning anything about Tucker, it is that this child does not like to be messed with. Leave him and alone and let him do his thing, and he behaves.

After four hours on the high-frequency ventilator, and even poorer gases, the respiratory team decided to put him back on his original vent and his gases began to improve again yesterday evening.

His right lung was partially collapsed as of yesterday afternoon, but a follow-up chest x-ray this morning showed that some strategic positioning of his right side yesterday helped improve the issue. Blood gases still aren’t “beautiful” but are showing gradual improvement. After four days of crazy, we seem to be headed in the right direction.

Some good news, additional ultrasounds were done of Tucker’s head and kidneys yesterday afternoon. Both came back normal! Yay.

A continued fear of ours is that Tucker’s prematurity will affect his brain, but so far both head ultrasounds have come back normal. Praise the Lord.

The biggest focus right now continues to be Tucker’s respiration….getting him stable and to a place where we can slowly begin weaning him off of the ventilator.

Thanks for your continued prayers and support. Sweet Tucker has no idea how heavily he is prayed for on a daily basis, but Tommy and I look forward to telling him one day about his army of prayer warriors. Here’s a little photo from yesterday.

One of our favorite things about Tucker is that he sleeps just like Tommy. One leg out, one arm above his head or on his face.

Monday, July 23, 2012

I told Tommy this morning, “just when I thought we hit our threshold…” things became more difficult. Laughably so. (I should preface this update by saying Tucker is now stable and sleeping like a baby), but Tommy and

I feel like we’re getting the crap kicked out of us emotionally every day. Last night was a tough night for sweet Tucker man.

All weekend, the nurses and neonatalogists were monitoring a leak in Tucker’s endotrachial tube that got up to between 94% – 100%.

Meaning, the oxygen and pressure that Tucker receives through this tube was leaking out, and the nurses were constantly having to tweak his pressures and oxygen level on the ventilator to compensate.

Late last night/early this morning, Tucker’s respiration faltered to the point where the neonatologist decided to extubate and reintubate Tucker with a slightly larger gauge endotrachial tube (after having to quickly resuscitate Tucker with chest compressions). Ugh.

There is nothing worse than hearing your child flat-lined while you were sleeping.

We were a little nervous about a larger tube being inserted into a very tiny baby, but the neonatologist assured us he wouldn’t have forced a tube down Tucker’s trache unless he felt it was large enough to accommodate it.

So far, this seems to have solved the leak issue and Tucker is tolerating the larger tube well. His leak has been at 0% for the most part, 17% at the most. His vitals stabilized after he was re-intubated.

While his oxygen level is not as low as it was last week (40% today vs. low 20′s last week), we are thankful that he is stable and we are praying for a quiet and low-key week on the respiration front.

Some good news, according to Tucker’s echocardiogram yesterday – Tucker’s PDA has closed.

The bad news is apparently it can reopen when they are flushing a baby with fluids like they did with Tucker yesterday. Right now, we are praying that it stays closed and Tucker doesn’t have to do another round of Indomethacin.

The phrase “one step forward, two steps back” seems to apply for our last 24 hours. Please pray for continued wisdom and discernment for the doctors and nurses that are caring for Tucker.

Pray for Tucker, that he would have a peaceful week and that his lungs would continue to develop and grow, and that his PDA would remain closed.

Pray for Tucker’s team of pediatric surgeons, who are discussing ways to get Tucker the nutrients he needs before he reaches 4 lbs.

Pray for Tommy and me – that we would lean into Jesus and believe that we are loved by a God who is good and merciful. Pray that in the midst of all of this, we will draw close to each other.

Saturday, July 21, 2012

Let the roller-coaster begin. The last 24-48 hours have been anxiety filled.

After an almost full 6 days of responding well to the ventilator settings things have begun to change.

Lots of warning lights and alarms have been going off around Tucker’s isolette as the doctors and nurses fine tune his oxygen, pressures, and total volume.

A chest x-ray this morning was showing that both his lungs were partially collapsed.

Additionally, there’s a fairly significant leak in his endotracheal tube and he’s too small to go up to the next size.

Before we leave Tucker each time, we whisper to him “keep breathing well.”

Would you pray that Joseph “Tucker” keeps breathing, that his lungs continue to mature?

Apart from all this respiration jargon, we have also learned about bradycardias. It’s when his heart rate goes from a healthy 140bpm down below 80bpm.

Apparently this is common for preemies and when it happens his heart rate usually goes right back up without any help needed. Meanwhile, it makes our stomaches turn.

He’ll have another echocardiogram tomorrow and they’ll look to see if the Indomethacin has closed his PDA or if we need to run another round. So pray that his patent ductus arteriosus (PDA) closes and that he stops scaring his parents with these brady’s.

Ellie and I are pretty exhausted but can’t help but see Jesus at work in all this. As we read to Tucker from the “Jesus Storybook Bible,” each day we are reminded that we serve a God who performs miracles and is “with us.” Jesus loves Tucker and we love telling him that. Can’t wait for the day that he’s able to realize that for himself.

Thursday, July 19, 2012

A real fast update; Tucker’s breathing is OK, he had a scheduled head scan that came back “normal,” the doctors started him on Indomethacin to help close his PDA, and the nurse made this awesome scrapbook collage for us of his footprints and handprints.

Wednesday, July 18, 2012

Things have been uneventful and stable thus far. His oxygen levels have been stable (down to around 21% and descent pressures), he got a new splint put on his right arm (check out our new photo tab to see that and more) mostly to protect his skin from getting rubbed, his bilirubin levels have consistently gone down so they have taken him off the phototherapy light for now, he had his first blood transfusion, and Ellie has gotten to “hold” him for the first time.

He’s going to have his head scanned in the next day or so as well as have another echocardiogram.

Pray that those come back with good and positive results.

Please pray for Ellie and I’s moods throughout all this. Several nurses mentioned the idea that some babies have a “honeymoon phase.”

Meaning, that some babies start off well and then hit a point where they began to act their age. This has been especially hard for me. For every bit of good news, I’ve been equally worried/fearful that the good news means that we are just that much closer to bad news. I want to be excited and celebrate but I worry.

Pray that I won’t let those voices into my head and trust and believe in the Lord’s goodness. The nurses also mentioned that some babies continue in this “honeymoon phase” and sail right through…..growing, maturing, developing, etc.

Would you pray that Tucker is a sailor?….one that will sail right through this next 3 months (give or take) in the NICU.

Also, pray that his lungs mature as quickly as possible and that we are able to remove him from the ventilator ASAP. Thank You!….check out some pics!

Monday, July 16, 2012

It’s bittersweet here today…..we’re being discharged from the hospital and although we are going home with baby items, we are going home without our baby.

The reality is sinking in that we won’t be able to share in that experience for another 100 days…give or take.

It’s heartbreaking for Ellie but we will be relieved to be back in our own home. Tucker has been doing well. Stable for the most part.

The doctors/nurses have needed to make adjustments to his oxygen, they’ve given him more surfactant, and his bilirubin level is slowly coming down.

Praying that this will be a big week for him. Praying for his lungs to grow and mature and for his PDA to close.

Here’s a little pic to try and show his size. Thanks for praying. 20120716-131735.jpg

Sunday, July 15, 2012

Overall, we’ve had a fairly uneventful 48 hours. Ellie is recovering as well as expected and we’ve been able to visit our little man down in the NICU a bunch.

We’ve been so appreciative of the high quality care/treatment our family has received from doctors, nurses, and staff.

We have also experienced such a huge sense of blessing/encouragement from family, friends, long-time acquaintances, and strangers alike. We can’t adequately share how much this has meant to our souls.

Thank you!

TUCKER: He’s just as active out of the womb as he was inside the womb. Such an amazing experience to visually see all the movements/stretches that Ellie was feeling INSIDE of her….remarkable.

As we sit and stare at our baby boy, we are overwhelmed by the intricacy of his body’s design….little tiny veins/arteries, little tiny shoulder blade rotating around, the little lines/wrinkles in the palm of his hand and around his knuckles, itty bitty fingernails, etc. Biggest priority right now is his breathing and his lung maturity. He currently has Respiratory Distress Syndrome (RDS) which is very common for preemies, especially a micro preemie.

A typical person breathes in 21% oxygen. Tucker is on a ventilator to help him breathe and give him a higher boost of oxygen as needed. The first night he was at 40%, the next morning he was at 51%, they gave him an additional dose of surfactant (his 2nd), and they were then able to adjust down to 21%.

He stayed between 21-23% all day yesterday (awesome) and last night. When we checked in on him this morning he was at 23% but they will potentially need to increase it and they also may give him another dose of surfactant.

Another big priority is his heart. Right now he has patent ductus arteriosus (PDA). After birth, when the baby begins to breathe, the ductus arteriosus should close to allow blood to flow to the lungs to become oxygenated. If it doesn’t, a heart murmur may be heard and the baby may develop respiratory distress and poor growth. A PDA may close on its own or medications or surgery may be used to close it (from

Essentially it’s a flap between the two parts of his heart and the prayer is that it closes on it’s own.

In other news, he’s on a phototherapy light to help with bilirubin levels, his skin tone has lightened up and he’s covered in these very cute blonde hairs, both of his eyes have opened (at birth, one was still fused shut), he’s gained 4 ounces (now weighing 1lb 14oz), his heart rate is good and great.

Praying for the Lord’s presence in/around his life.


Friday, July 13, 2012

Joseph “Tucker” was born! 25 weeks, 5 days. 1lb 10oz. 13.5″.

Birth story found here.

Thursday, July 12, 2012

From Facebook Keep praying for Tucker. We’ve been in the labor/delivery room all day.

His heart is having some fairly severe decelerations and Ellie’s been having contractions throughout the day. Consistent decelerations is cause for immediate delivery.

Pray that Ellie stops having contractions and Tucker’s heart stabilizes. #staypregnant … … …

Prayers are working thus far. The heart has stabilized for the most part. Ellie is having less frequent contractions and less severe contractions.

Prayer is for no contractions and a stable heart rate for another 9 weeks or more!

Wednesday, July 11, 2012

Great day and some great news. Yesterday, the doctors continued to give Ellie muscle relaxers every 6 hours to prevent contractions…and it worked. She didn’t have any all day. We also met with our MFM Specialist for an ultrasound.

The incredible news is that Ellie’s cervix had NOT shortened but rather LENGTHENED to approximately 2.78cm.

Additionally, they were able to visualize the stomach with fluid in it. It doesn’t rule out esophageal atrisia, but is good positive affirmation that the stomach is there. The amniotic fluid level is still normal-high…which goes back to EA.

With Ellie’s cervix being stable and no contractions, doctors are considering letting Ellie complete her bed rest from home starting in just a few days. They are going to check on things again tomorrow or Friday.

So…..are your prayers for Joseph “Tucker” working? Absolutely! Keep praying for this little man….we want to keep him in the womb til September or ideally October! We’re excited for you all to meet him then. This has been a hard journey thus far, but we’re convinced that he’s worth fighting for…..that life is worth fighting for. Thankful that Jesus believed that about us!

Monday, July 9, 2012

We’re sitting in the ER right now. Long story, short…..Ellie started having contractions this evening.

Her cervix is really thin/short and test results for fetal fibronectin came back positive.

They are giving her muscle relaxers to squelch the contractions and they are going to give her steroids that will help strengthen/mature Tucker’s lungs in case he is born in the near future.

We’re praying like crazy that Tucker will stay in the womb for at least 9 more weeks…Ellie will be on hospital bed rest til then or til he’s born whichever comes first.

There’s a high risk that Ellie could deliver in the next two days, two weeks, or (what we are praying for) in more than two months.

Would you pray now that Ellie is able to carry Tucker to at least 34 weeks!?!?

Saturday, July 7, 2012

All of these doctors appointments have been a major drag but one of the things that I have appreciated most about them is that we get lots of opportunities to see our little man.

Our last several ultrasounds have been over an hour long each time and most of that is because I keep asking questions and ask the technician to look closely at certain body parts.

I thought I’d share just a few. Two of them are of his “abnormal” arm. In these pictures it was almost as if he was holding his hands together. We could see his 4 fingers clearly and then we could see his other hand fully developed (not in the picture though).

The other three pictures are pictures of his sweet little face.

Tuesday, July 3, 2012

In regards to Joseph “Tucker,” no news means good news for us.

The same abnormalities that Tucker was flagged with previously are still there; radial aplasia and no stomach bubble, which points to either esophageal atresia or tracheoesophageal fistula.

Both fitting with VACTERL association. Surprising as this may be, this news was a relief to us. We’ve settled into the new “normal” of what these symptoms mean and are hoping that this is all that’s affected.

The heart’s looking good, kidneys are ok, the brain is normal, the legs appear to be great, he has a 3 vessel umbilical cord, and he’s on track for weight (1.7 pounds).

We also tried to get another good look at his thumb and were unable to get a visual of one. At this point, I’m thinking that he doesn’t have one and in most cases of radial aplasia there is either no thumb or a partial, non-functioning thumb. The thumb is low on our list of priorities in comparison to all the other possible anomalies.

In regards to Ellie, we received some discouraging news.

One is that her amniotic fluid level is high. Not abnormally high, but definitely higher than a typical pregnancy (further points to EA or TE Fistula). If this fluid level continues to increase, she’s at a risk for pre-term labor.

Our goal is to get to at least 34 weeks (early September) and ideally to full-term (October 21st)….right now we are only at 24 weeks.

Secondly, because of some other things going on….the doctors have put Ellie on temporary bed rest. They want her to lay around the house until our next appointment which they scheduled for next week.

We are thankful that Tucker’s heart and other vital organs continue to look normal from what the doctors can tell. Please pray that Ellie’s body will be able to hold Tucker in until at least 34 weeks or further.

Pray that the issues currently on the table dissolve over the next couple of weeks of rest and taking it easy.

Thank God for Joseph “Tucker” and all the joy and happiness that he already brings to his parents. We’re so very appreciative of your support in bathing our son in prayer.

Monday, June 25, 2012

And so we wait……Unfortunately (or fortunately) there’s not much to update everyone on.

I think the reality is, the next 3-4 months is going to be filled with lots of questions and no answers.

Most of the possible birth defects/anomalies can’t be confirmed until Joseph Tucker is born.

However, starting next week (July 3) we will begin to have ultrasounds with our Maternal Fetal Medicine Specialist every two weeks. From my understanding, the purpose of these bi-weekly ultrasounds is to carefully monitor and examine his heart.

As he (and his heart) continue to grow we will more reliably be able to view all the functioning parts of his heart. My day is sprinkled with prayers for a healthy and normal heart.

Thanks for praying alongside us. Additionally, this previously mentioned prayer has been at the top of our list;

  • Right now the safest and best place for Tucker is inside the womb. Pray that Ellie is able to carry him to full term. Polyhydramnios can occur (too much amniotic fluid) which can result in premature labor.

Friday, June 15, 2012 (b)

Just got word back from the rest of the amniocentesis results. All 46 chromosomes are “normal” boy chromosomes. They “FISH’D” for the major three last week (Trisomy 13, 18, and 21), but they still had to examine the others. Now that we have the full spectrum tested, it’s nice to know we’re not also looking at any other chromosomal abnormalities.

Friday, June 15, 2012

Well for the last 7 days we have fully submersed ourselves into researching every possible cause and explanation for Tucker’s condition (probably too much for our own good).

There are several that could be considered likely but in our own understanding we keep coming back to VACTERL Association (we won’t speak to a doctor again until July 3rd). So we’ve tried to find every blog and caringpage we can on children born with VACTERL.

We’ve stumbled across some beautiful sites, filled with amazingly cute children and strong parents (in fact…Ellie’s become online friends with some of them), but unfortunately chocked full of hard journeys. We’ve come to realize two big things;

  1. Our hope for Tucker can not be found in someone else’s story… can only be found in Jesus.
  2. A deformed arm is the least of our worries.

We are praying against all the other possible/common abnormalities and would love for you to join us. Our hope is that this is the most mild case of VACTERL ever!

  • Pray for a healthy spine
  • Keep praying he has an anus
  • Keep praying that Tucker’s heart is normal and 100% healthy
  • Pray that his trachea is normal. Often times the esophagus can fistula into the trachea
  • Pray that the Lord miraculously heals and connects his esophagus to his stomach and that we can see evidence of his swallowing of amniotic fluid
  • Pray that both of his kidneys are fully functioning
  • Keep praying that Tucker has a functioning thumb on both hands. Often times with radial aplasia there is either a partially formed thumb or no thumb at all. Also pray for us to find an excellent pediatric orthopedist for down the road.
  • Right now the safest and best place for Tucker is inside the womb. Pray that Ellie is able to carry him to full term. Polyhydramnios can occur (too much amniotic fluid) which can result in premature labor.

; Friday, June 8, 2012

Preliminary test results are indicating negative for Trisomy 13, Trisomy 18 (Edward’s Syndrome), and Trisomy 21 (Downs). Still leaves lots of uncertainty but an answer to prayers thus far.

Thanks for continuing to be in this with us. We feel blessed.

Another huge answer to prayers thus far is that Tucker and Ellie are doing great.

The first 48 hours after having an amniocentesis are critically important in determining whether or not an infection has been introduced into the uterus and we have officially surpassed that threshold. We’re to keep monitoring things for the next two weeks but for now he’s still doing his normal routine of kicking Ellie in the gut early in the morning and late at night.

These little jabs/movements used to be a fun/cute thing for us to experience as a couple and have now been transformed into radical reminders of God’s divinity. God is allowing Tucker to constantly remind us both that He creates life and that He created Tucker’s life. Here’s two of our favorite pics of Tucker man.

  1. Looks like he might be a bit of a thumb sucker
  2. A pretty fun 3d facial profile @ 16 weeks with his hand on his head
Tucker Sucking His Thumb
A 3d Facial Profile of Tucker @ 16 weeks

So we’ve had some sighs of relief but what lies ahead of us for the next 4 months is……..uncertainty. We’ve crossed some chromosomal syndromes off the list but still won’t know things for sure into he’s born. If these are symptoms pointing towards VACTERL Association, some other potential complications are;

  • V = Vertebral anomalies
  • A = Anal atresia (no hole at the bottom end of the intestine);
  • C = Cardiac defect, most often ventricular septal defect;
  • T= Tracheoesophageal fistula;
  • E = Esophageal atresia;
  • R = Renal (kidney) abnormalities; and
  • L = Limb abnormalities
  • Tucker’s spine, kidneys, and lungs seem to be ok. Pray that these remain to be 100%

A God-sized prayer would be;

  • Pray that Tucker’s esophagus is in fact connected to his stomach and that we are able to see evidence of his ingesting of amniotic fluid at future ultrasound appointments.

; Thursday, June 7, 2012

Thursday, June 7, 2012

“I’m not a crier, I don’t cry….I work out, I have a job, I have hobbies.” Famous line from Ben Stiller in “Starsky and Hutch,” and somewhat of a life mantra for me over the years.

Well….these last couple of days I haven’t worked out any. Ellie and I have been stunned with some of the most difficult news that we have ever received. Here’s a rundown of what the last 3 days have looked like for us;
  • Monday morning went in for a routine 20 week ultrasound. It was an unusually long ultrasound. When the doctor met with us afterwards she told us that they weren’t able to get all the measurements on one of Tucker’s arms and that they weren’t able to see his stomach. They asked us to come in the next day to meet with the ultrasound specialist.

  • Tuesday: After 24 hours of worry, we met with the Maternal-Fetal Medicine Specialist for another lengthy ultrasound. She told us that Tucker was missing his radius bone and that the ulna bone was shorter than it should be. She also told us that they aren’t seeing any fluid in his stomach (more on both of these below). She kept using the word VACTERL Association as a possible diagnosis but also mentioned that these symptoms fit some serious chromosomal syndromes. She wanted us to come back the next day and meet with a genetic counselor.

; �

  • Wednesday: After another 24 hours of worry, tears, sadness, and internet research we met with the genetic counselor. Our meeting with the genetic counselor wasn’t really conclusive. She just went through a series of syndromes and other possibilities that our little man “could have” and encouraged us to have an amniocentesis performed that would rule out a fatal condition called Trisomy 18 as well as Downs syndrome, and some other chromosomal disorders. We decided to move forward with the amniocentesis and we will know about all chromosomal syndromes within two weeks.

; The specialist we met with after the counselor continues to keep VACTERL Association at the top of her list of possibilities but cannot make a complete diagnosis until after delivery. Right now, we are certain of two things:

  • Our son is missing the radius bone in his right arm and his ulna bone is shorter than it should be, which makes his right hand severely/abnormally angled. We did find out that it appears he has a fully developed hand on his right arm, with from what she can tell has five fingers.

  • Currently, ultrasounds are showing strong signs of esophageal atresia – meaning there is no connection between his stomach and his esophagus. We won’t be able to confirm this until later in the pregnancy (at least 26 weeks) and the specialist may consider conducting a fetal MRI.

; Some things that we are thankful for:

  • Joseph “Tucker.” We’re thankful for our little guy and we think it’s important for you guys to know who you’re fighting for with us. We get excited about the idea of you all praying for Tucker by name.

  • A healthy spine with no missing vertebrae. Often times missing vertebrae and scoliosis are associated with VACTERL association patients.

; �

  • A strong, healthy heart. So far his heart looks great, but this is something that they will continue to monitor as the pregnancy progresses since congenital heart disease is one of the symptoms most frequently associated with VACTERL Association

; �

  • Lots of movement, kicking, and squirming. He is an active little guy and we love feeling him move around in Ellie’s tummy.

; �

  • Both of his legs and his left arm look normal.

; �

  • Weight is on track.

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  • Three arteries in the umbilical cord (often times patients with VACTERL Association only have two arteries in their umbilical cord)

; �

  • Normal facial and cranial structure

; Things that we need major prayer for:


  • There are some strong risks associated with an amniocentesis test, the next 48 hours are vital. Please pray that Ellie and Tucker are perfectly ok.

  • Please pray that all chromosomal syndromes are eliminated from the list of possibilities.

; �

  • Pray that he has a thumb on each hand

; If these birth defects are signs pointing towards VACTERL Association, there is a host of other abnormalities that often accompany radial aplasia and esophageal atresia. For that reason, we are asking that you pray hard for these things;

  • A healthy heart. As of right now, Tucker’s heart looks normal and is ok. Pray that his heart stays 100% healthy

  • Sounds weird but…….pray that he has an anus. We won’t no for sure if this was formed properly until he is born and without one there will need to be extensive surgeries/reconstruction

; �

  • Tucker’s spine, kidneys, and lungs seem to be ok. Pray that these remain to be 100%

; A God-sized prayer would be;

  • Pray that Tucker’s esophagus is in fact connected to his stomach and that we are able to see evidence of his ingesting of amniotic fluid at future ultrasound appointments.

John 9:1-5 has never been more penetrating to me. Please pray this over Tucker’s life and pray this for Ellie and I. Pray that this is all happening so that the works of God might be displayed in him (and in us). Our next appointment will be July 3rd, then we will go in bi-weekly for sonograms and check-ins. The hope is that Ellie will carry him as close to full term as possible, assuming the amniotic fluid levels within her uterus remain within a certain range. Per the specialist, the best place for Tucker to be right now is in her tummy, where he is receiving the nutrients he needs. Thank you again for the prayers and support. Love, Tommy (and Ellie….and Tucker)




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