Whittman’s First Few Days and Weeks…

Updates on Whitt’s circumstances and progress in those first critical days and following weeks that were sent to friends and family via email or Instagram.

November 4th, 2013

Parenthood is many things. Joy, struggle, happiness and hardship. And on the hardest days requires is to walk around with our hearts outside our bodies, which is precisely where Wade’s and mine have been for the last 15 hours as sweet baby Whitt has struggled to find his way in this world. He came in unable to breath on his own and unresponsive. However, each hour brings encouragement and progress as he battles his way through. We are hopeful, optimistic and proud of his fighting spirit. Lob one up to the heavens if you don’t mind, they’re working. As they do.

Mr Whitt (Whittman Wade) had a really good night. His eyes are open this morning and he's much more active (all great signs of good brain function). He's maintaining 100% oxygen levels. They'll continue monitoring, blood infection tests haven't come back yet. Still breathing assisted on a ventilator. We're happy and encouraged with he progress over night .

November 5th 2013

Things continue to look up. They just took the ventilator out and he's breathing on his own. Huge progress!! I'm am going to try and pump in a little bit and see if I can't get some milk, if I can they'll try feeding him later tonight. They are still unsure what caused this all. But think he could have contracted streptococci during delivery. (which I tested positive for last week) I have been on anti-biotics for a few days but I guess normally they give you a dose intravenously prior to delivery. But because I progressed SO fast, there was no time. He will have to stay in NICU for 5 days while on intravenous anti-biotics. He is off oxygen and if we can get him eating, that will be the only reason to remain in NICU. Feeling so encouraged. Thank you for your love and support. Keep praying, it's working.

Most of you know but we had a setback tonight after a really good day. The neo-natalogist came in late afternoon and said Whitt had had a seizure. Like everything else thus far they're unsure as to why but it seems to be a result of hypoxia or lack of oxygen during or after delivery. The put him on an anti-seizure medication, designed to reduce the likelihood of a seizure and protect the brain by regenerating cells in the event another one occurs, which he did have around 9:00 this evening. They have changed to a new medication (designed to work much the same way) & will continue to monitor him through the night. He is scheduled for a cranial ultrasound in the morning that will let us know if there is anything to be concerned about...congenital defect, blood or swelling. The doctor doesn't anticipate finding anything as all other signs are good, he is off oxygen, breathing on his own and maintaining good levels. He remains responsive and is crying now and then. He is still on anti-biotics for the Strep B infection he could have possibly contracted via me and will remain on them for 3 more days. There has been no discussion about keeping him longer than the initial 5 days. I still haven't been able to feed him, I'm pumping and they hope to try and feed him in the morning through the nose. Wade and I are dying to hold him .

It was discouraging news. Feels a bit like two steps forward, one step back, but we continue to remain optimistic and hopeful.  Wade gave him another blessing tonight, he shows no signs of backing down from the fight and neither do his parents & he is sleeping peacefully right now. We have been overwhelmed at the outpouring of love and support coming from near and far. Bode is clueless and loves to push the buttons on my hospital bed, Tess gets very much that something is out of sorts and has been very sweet and tender hearted, teary and prayerful. We have been open and honest with her in regards to mom and the baby, she does much better  when she knows what's going on vs trying to work it out and guess in her little mind.
We are still very happy with the level of care he is receiving. Don't stop praying.

November 6th, 2013

It's been a better day. Just steps forward :) No seizures since 9:30 last night. He's rested much more peacefully today, seems much more relaxed. This could be do to the anti-seizure meds, or to the feeding that was started today, another great step forward. I have been pumping and they are feeding him via nasal tube. They started with just 5ml, and will move it up by 5 ml every other feeding until he reaches the recommended 30-40 ml per feeding, so long as he tolerates it ok, which thus far he has. If he continues to do well, they will try a bottle tomorrow to see if he can suck and swallow, if that goes well, I may be able to feed him/hold him for the first time tomorrow night or Thursday morning.
Whitt had a cranial ultrasound this morning and all checked out well. No sign of blood, water or swelling. All really good, a relief. But again, provides no explanation for the seizures. He still has some slight tremors in his feet, after effects of the seizures and supposedly nothing to be alarmed about.
Based on his behavior the past 24 hours they think that perhaps this was caused not by an infection but maybe a lack or reduced oxygen the last few minutes or hour of labor or delivery. I had a condition called 'polyhydrominos', aka loads of amniotic fluid. I had this with Bode and Tessa too. There is a possibility that when my water broke and all that water quickly flushed out & then the rapidity of the labor and delivery (I checked into the hospital at 5:30, Whitt was born at 6:20) that it sent Whitt and the placenta into a shock of sorts. They didn't have time to get on top of the changes in environment. As a result, he came out not breathing and he is now just trying to recover or catch up. Again, nothing is concrete, all the doctors seem very puzzled by it all. While they don't know for sure how it all happened, they do know how to take care of him now. Wade and I remain very comfortable with the level of his care. He is the only baby in NICU, so he has two nurses and one neo-natalogist at his beckon call. Everyone in the hospital seems to know about him. All the nurses and on staff OB's ask about him frequently or go down themselves to check on his progress. There is a pediatric neurologist on staff here that we will meet with next week. They will want Whitt to have an MRI in two months or so after everything has calmed down to ensure the brain hasn't suffered any permanent damage.
Today was movement in the right direction. We are overwhelmed at the outpouring of support. The notes, emails, texts we have received have left me in tears more often than not as loved ones from both sides of the world cheer us forward. We will get through this. We will come out on top. It's how we try to do it in this little family of ours.
Thank you for being at the forefront of our cheering section. We love you.

 

November 7th, 2013

Yesterday was a day of happy tears. It started at 5 AM when I walked down to NICU to give the nurses some milk for Whitt. They were changing his bedding and asked if I wanted to hold him. Holding your baby right after their born, fresh from heaven is pretty special, but being able to finally cradle them in your arms after a few days of only being able to touch them at arms length through an enclosed incubator...well, that was a moment that may leave me in tears every time I think about it for the rest of my life.
The goals yesterday were to get Whitt to swallow and get the feeding tube out. He passed both with flying colors. Did so well in fact that the neo-natalogist came to room at 2 in the afternoon and asked if I would like my baby in room and wanted to try breastfeeding. Well, duh!!!! Get him in here!! We got him for a couple of hours, Bode and Tessa were finally able to meet him and dad got to hold him too. Bode walked in to the room and saw the baby and said, 'Baby ok mama?' And I could finally answer in confidence, 'yeah, bubs, baby is ok'
The challenge right now is getting Whitt to wake up enough to eat. The anti-seizure meds he is on are a sedative of sorts and trying to wake him to eat is near impossible. There has been one or two occasions where I had to pump and have him feed via syringe as he just wouldn't rouse. When he awake enough, he seems to be figuring it out well and learning that that's what he needs to do if he's hungry.
The plan now is to discharge him late Friday night or early Saturday morning. He needs to be able to maintain his current progress, eat sufficiently and finish his anti-biotics. He will move to an oral dose of the anti-seizure meds and will remain on those at least until we meet with a pediatric neurologist in a weeks time who will evaluate at that time. I am hoping the oral dose won't cause him to be so sleepy.
Bode weighed 3.8 kilos at birth (just over 8 lbs) and was 49 centimeters (19 inches) He was sturdy in size and I am confident that it has put him a position to fight more aggressively the challenges he's encountered this week. He continues to make us proud with his determination to get better. We are so encouraged by his progress and so grateful for our Heavenly Fathers mercy and willingness to respond to the many, many prayers being said on his behalf. His name is on temple rolls around the world and in the hearts of many homes. We feel very, very blessed and very, very grateful.
We aim for things to remain steady today. Awaiting some results from blood tests to see if there's anything we've missed.

 

This came and visited my room today. Who wouldn’t be cheered by this sight? Bode’s been just the right amount of crazy this week to keep us all smiling.

Hopeful and happy.

November 9th, 2013

Nearly wireless in the NICU. Whitt’s aiming to make it home tonight and we’re anticipating he’ll make his target. While not out of the woods, we are in a lovely clearing with lots of sunshine and hope. Your prayers on his behalf have left us with a level of humility we have never known. Thank you.

Our happiest news yet. Baby Whitt is home! They even let him out a little early so he could go home with mom. He finished up his last round of anti-biotics, had been Stable for 48 hours and got a bath :) so they released him Fri afternoon vs the Fri night or Sat morning originally planned on. Tessa came with her dad to pick us up & was pretty excited. The kids love him and have been very sweet to him. We're pretty sure Bode thinks his name is actually Baby Whitt.
I walked down to the NICU Thurs night for a feeding to learn how to administer the anti-seizure meds orally at home (he had been getting them via IV). The brain can actually be permanently damaged during a seizure, killing brain cells. During this stage of such active development, a concerning situation becomes dire. So we take them. But I hate them. They stop short of sedating completely. We get maybe an hour of open eyes in a 24 hour period and it's usually the hour right before we have to readminister the meds. It breaks my heart to have to give them to him again. As a result of the sleepiness it becomes hard for Wade and I to gauge how he is doing elsewhere, as he rarely cries and it's difficult to know how he responds to sound. Eating can be a discouraging process sometimes, a few times leaving me in tears as it would take me as well as 2 NICU nurses working full time poking, prodding, rubbing, undressing just to get him to open his mouth & then again every time he needed to suck. We are anxious to meet with the neurologist on Tues to get some more answers and see if we can't ween off the meds. Before we left the hospital they changed his dose from once a day to two smaller doses in hopes it would balance it out a bit more. We're hoping it will and that we'll see more action from him in the coming days.
We remain very hopeful and optimistic about his progress and are infinitely grateful for the distance he's come in just 6 short days. While exhausted, physically and emotionally, we are so happy to be home and to be together as a family again. We are also keenly aware that our Heavenly Fathers mercy has been instrumental in his progress thus far and that the prayers of many friends and family have initiated that mercy. Thank you. We hope we can repay the same level of compassion someday.

Well, I did it! I’m home! And now I’m just sitting here thinking about all the wonderful family and friends that I haven’t met yet that helped me win this fight. Thank you. Someday I would like to thank you in person.

November 13th, 2013

A brief update on the status of Whitt.  He has been home since Friday evening and we are enjoying having him here.  His siblings continue to think he is pretty cool and will stop playing to give him plenty of kisses on this forehead. Bode continues to think his name is Baby Whitt and corrects me when I just call him Whitt.  Tessa is the ever adoring sister and love to hold him and just stare at him.  Hopefully, this will last a while, but somehow I think they will find a way to bug him.  His time will come.

Over the past week and half we have felt an immense out pouring of love and concern for Whitt and his progress. Family and friends have been sending messages to us letting us know that they are praying for him in their prayers at home and at their various churches.  This has humbled us greatly and had brought us to tears numerous times.  We remain optimistic that Whitt will make a full recovery, but are mindful of the Lord’s will in all that we do.  This experience has humbled me as I reflect on others who have been in similar circumstances. I truly feel a greater compassion for those of you have been through the struggles of your children’s, family and friends. Although this lesson is a difficult one to swallow, we are thankful that so many of you have lifted us up in what has seemed some dark, dark days.

Yesterday was an anxious time for us here as Whitt was having his follow up with the Pediatrician and the Pediatric Neurologist.  We were hopeful to come away with some definite answers to the impact of the traumatic delivery, but unfortunately that was not the case.  We did leave the visits, feeling content with the Neurologist’s approach and tests that he has scheduled to investigate in greater detail what future implications if any Whitt will live with.  His seizure medication has left him very sleepy and at times unresponsive.  The neurologist wants to change that as soon as we know more about what is going on.  He still hasn’t cried for more than 1 little cry of disapproval and we are hopeful that it may come as soon as the medication situation is worked out.

Today, we head to the audiologist to check out his hearing and will hopefully check off some more boxes on our milestone list and then tomorrow we hope to get an MRI appointment for a bull brain scan and an EEG.

 

November 16th, 2013

We went for an EEG test this morning at the pediatric neurologist's. They hooked him up and monitored him for about 45 minutes. Wade and I sat and looked at the screen anxiously for the whole time not knowing what all the lines and movement meant. It turns out Whitt has some minor damage on the left side of the brain, (this is congruent with the fact his seizures were on the right side of his. body) presumably as a result of the traumatic/hypoxia delivery. The damage has left some abnormalities in the activity and connectivity. The abnormalities are concerning because they will put him at a higher risk for continued seizures.
Sooo....the plan is to keep him on seizure meds for the next 3 months with the hope that as he grows and develops his brain will heal itself and he will outgrow the abnormalities. The Dr did change his medication to one that will be less sedating, we will spend the next few days weaning off the old and building up tolerance to the new. In three months we will do another EEG to see how he is doing, if the abnormalities still exist and re-evaluate. We will also do an MRI on Monday that will do an extensive map of the brain to see if there is anything else we should be concerned about. Please keep him in your prayers Monday, Whitt will have to go under general anesthesia. They want to ensure he is fully sedated and that there is no movement during the scan. I am fairly anxious about that...
We really like this neurologist & have a lot of confidence in him. He is great with Whitt and very thorough with us. Today was not the best news, but it certainly wasn't the worst. There were a few children that came into the office today while we were waiting that left me very grateful that the problems that are ours, are ours. We have been blessed and continue to be. We remain hopeful that little Whitt will continue to fight his way to the top of this battle. His progress in his two short weeks on earth is very encouraging, we have much to be grateful for. Thank you for your ongoing support, thoughts and prayers. We will keep you posted on the MRI.

Whitt showin’ em what he’s made of.

November 18th, 2013

We went in for an MRI this morning. Aside from it being one of the more terrible things I have experienced thus far as a mother...no one should ever have to watch their two week old infant fast and then go under general anesthesia...it turned out as well as we could have hoped for. He tolerated the anesthesia well and came out of it smoothly. The team of Drs were very good and very invested. And, best of all the MRI came back totally clean. Nothing on or in the brain to be concerned about. What an outpouring of gratitude and relief Wade and I felt. We haven't yet spoken to the neurologist, just the radiologist and neo natal pediatrician, I imagine when we do, he will explain the findings or lack thereof more in detail.
We are thankful to have that test behind us and are more grateful for the good results. We will stick with our seizure meds for the next few months in hopes the irregularities will begin to heal themselves as Whitts brain continues to grow and develop.
It was a good day in the Emirates.

If you have to be in the hospital, you might as well wear a darling, miniature gown.

Grateful for modern medicine and grateful to have this day behind us.

December 4th, 2013

Whitt had follow up appts this past week with both his neo natalogist and neurologist. Both of which went very well.
Neo natalogist is happy and encouraged with his progress. Says his muscle control is much better and he's charting well on normal newborn development i.e. focusing and tracking with his eyes, a normal balance of awake and asleep, crying etc. He wants to see him gaining a bit more weight, but like me is not overly concerned as he started out behind only getting fluids and not eating well due to the Phenobarbital. He's eating well now and will catch up.
The neurologist talked with me a bit more about the MRI. He was mostly concerned with what they call the 'diffusion of the brain'. A picture that differentiates between the light and dark spots...more dark indicates damage or extensive hypoxia. Whitts brain was clear of both. He too said common neurological tests are checking out well (focusing eyes, non fisting hands). He seems very optimistic that Whitt will make a full recovery. The plan is still to do another EEG in a few months to see how the left side of the brain is doing. If the abnormalities have cleared up we will begin weening his off the Keppra.
The Keppra has been a MUCH friendlier medication. We hear Whitt cry, see his eyes often and don't have to start up a big brass band to get him to wake and eat.
All in all, things are moving in all the right directions. Everyone in the hospital knows Whitts name and loves to see him and see him progress. So do we.
We're feeling so encouraged and so grateful. So much to be thankful for this holiday season.

 

Whitt’s big brother gets restless at the Dr’s appointments…