Saturday, July 4

A Blessing in Disguise

We suspect that last night we witnessed a blessing in disguise. A really, really great disguise for a blessing - so good in fact you can barely believe it could ever be a blessing.

At about 10:30 p.m. last night Bryce's nurse and RT for the night were re-taping his ET tube (the tube that the ventilator uses to push oxygen into his lungs). This is a common occurrence and though it had been a very trying day Bryce had finally settled and wasn't de-satting constantly.

Suddenly something went wrong and before either of us knew what was going on they were saying that his tube was out and calling for help.

Well, one thing I can say for sure is when you call for help around here, help literally comes running. Nurses and RTs and eventually the resident and Dr. Hodges showed up, alert and ready to save Bryce's life all over again. At this point they had begun "bagging him," which just means they were using a bag to manually push air into his lungs and he was not on the ventilator at all. His little heart was fighting hard but as he desatted (his oxygen went scarily low) his pulse began to fall from the 160s to the 120s to under 100 and lower still.

It was the second scariest moment of my life - I'm sure you can guess the first.

Caleb and I stood helplessly by as a team of people got his oxygen back up and his heart rate came up on its own. Then it was the excruciating task of re-intubating Bryce, an experience no parent should have to witness. Bryce was a trooper though, as usual. It took two tries by the resident and finally a third by Dr. Hodges and the tube was in. All this while, he is being oxygenated with the bag and satting high for the first time all day.

An xray was ordered stat to verify that the tube had been properly positioned and came back showing marked improvement over the 6 p.m. xray. At 6 p.m. his left lung was so collapsed you could hardly make it out on the xray and now you could not only see it but you could see it had air in it too. It seems that the high pressure from bagging him for that time had been enough to help pop his left lung open a little.

A blessing in disguise? Quite likely, but terrifying none the less.

He has been very slowly improving the oxygenation of his blood and getting his CO2 down over night. A 6 a.m. xray doesn't show much more improvement but it's our experience that when these little lungs collapse it's a struggle to get them open and working well again. We will just pray that his lung will reinflate and get his oxygen needs down again soon.

Thank you all for your thoughts and prayers yesterday and over night - I believe they are what got us through to this new day. We are eternally grateful.

Friday, July 3

What a Day

Today has been one of those days, the days that make you want to throw your hands up in the air and ask the universe, "Really?!"

Sure, we've had some rough days here and there in the last month, particularly the scary night Bryce came crashing into our worlds. But nothing prepares you for a day when your son is put back on the oscillating ventilator, and then bumped up to 100% oxygen and still continues to desat (desaturize his blood, i.e. not enough oxygen is being pumped throughout his little body) continually for hour after hour after hour.

All the while, Caleb and I stand by his bed, with our hands laid on him in a futile attempt to calm and soothe, or to at least encourage some oxygenation. Perhaps a minute or at the most a few go by where there are no alarms and he doesn't appear to be litterally crawling out of his isollete, but these moments are few and far between.

We look at eachother in desperation, knowing that the doctors and nurses are doing all that they can. We search desperately for a respiratory tech when he's satting 50% and there is no one in sight. Although we know there is little they can do we expect to see them running.

Six long hours and many tears later here we are, asking you all, yet again, for your prayers for Bryce.

Dr. Hodges said that his blood gas tests reveal he is still oxygenating his blood well enough but that if they can't settle him enough with the pain and sedation medications to get his ventilator settings down or if his blood gas tests show he is no longer oxygenating his blood sufficiently then we may have to consider another rounds of steroids. He said that this could become life threatening.

We simply refuse to believe that Bryce won't make it but we need your prayers as reassurance, please.

We will be "rooming in" tonight, which means we'll sleep here in a room on the same floor as Bryce in case they need us quickly. This provides a small dose of comfort to two very weary, new parents but also serves as a reminder that we are not over reacting to the seriousness of Bryce's condition.

Please, please keep us in your thoughts and prayers over the next day, especially throughout the night.

Pray for us to see the light at the end of this long, dark tunnel. Pray for strength and endurance for Caleb and I so that we may be here for Bryce, in whatever capacity he needs us to be. Pray for Bryce's little lungs to heal, regenerate and strengthen. Pray for our poor parents who are here every minute with us, standing by our sides, feeling the same pain that we are but with even less resources for helping us than we have to help Bryce. And don't forget to thank God for our many blessings: for Bryce, for family and friends, for doctors and nurses and especially for love.

Thank you all so very much.

NICU Cliches...

...It's an emotional roller coaster....
...Two steps forward and one step back....
...We're see-sawing...dancing around...trying to find a fine balance....blah, blah, blah

You know the thing about cliches? People say them over and over again because they fit the situation perfectly and because sometimes it's too hard to find anything better to say.

And so we listen to these words, beginning to hear them before they are said, anticipating their regurgitation like we do the stress of another NICU day each morning when we wake.

These last days have been so much more of the same even though they are each uniquely anxiety ridden that I have struggled for the right words to say. And have therefore settled on no words at all. I'm genuinely sorry as I know so many of you care for us so much and just want to know what is going on.

Fortunately, there is good news to go with the bad. This is the reason I get out of bed in the morning - in the hopes of finding that one cloud with silver lining in this ever-present, tempestuous sky.

Bryce had his surgery a couple of days ago to place the shunt which is meant to help drain the excess cerebral spinal fluid from his ventricles and reduce the swelling in his brain. The days that have followed have been hard. Bryce has struggled to find comfort and properly oxygenate his blood ever since. No one really seems to have a good grasp of why other than he is so little and so early and his little body is so immature.

I posted that he had experienced some seizure activity. These premature babies have premature nerves, brain activity and muscle control and so tend to be quite jerky already (this is what you feel when you say you feel your baby kicking). Because of this it can be quite hard to tell when they are just being jerky and when they might be having a seizure.

As we were about to leave the hospital late last night and were peaking on him, saying our good nights, we noticed Bryce having some rhythmic jerkiness coupled with eyes twitching to the back of his head. His poor little body and head would get so red they were almost purple and he tensed his entire body so hard that he arched his back (while on his tummy) and picked up his whole head.

We immediately alerted his nurse who concurred it wasn't normal Bryce activity. She called the doctor on for the night and he said he would have to see it happen and it would have to last longer than 5 minutes for them to treat him for a seizure. Over the next hour it reoccured several times but never for more than a minute or two and never with the doctor in the room. Eventually he settled down and seemed to be resting again so we left for the evening hoping more than ever before that we were wrong.

His oxygen needs have steadily increased since the surgery and since his weaning doses of the steroids. He is now off the systemic steroids but on a new steroid that is inhaled directly to his lungs to hopefully help them mature more. It will be about a week before we can hope to see any benefits of this new steroid treatment but at least it doesn't come with the side of effects of the other.

This morning, while we were out trying to chase a metabolic geneticist's nurse to take samples of our blood and urine for testing, Bryce was put back on the oscillating ventilator. This is especially hard for us because getting off of that ventilator was the one thing we seemed to have gained from the steroid treatment and now it is gone.

We find comfort in knowing that although Bryce has now been with us for almost an entire month, he is only 28 weeks of gestation and you simply can't ask for him to be doing too much yet. If he needs to be on this ventilator for another month, or more, we will live with that. We just want to take him home... maybe by Christmas? Is that too much to ask? We pray not.

On the up side, Bryce is steadily gaining a little weight. Remarkable considering how many times he's begun getting my milk, then stopped, then gotten it again, increased it and then stopped again. His official birth weight was 690 grams, he is now weighing in at a whopping 920 grams - 908 grams is just at 2 pounds. He's also back on trophic feeds - just to wait and see and hope his little belly will start moving some of them through to his diaper all on its own.

Best of all though is a head ultrasound yesterday revealed that the swelling in Bryce's left ventricle has been significantly reduced by the shunt. His right ventricle is still pretty swollen but also looking better and the neurosurgeon confirmed this morning that he is happy with what he sees.

So two steps forward, one step back...emotional roller coaster...yadda, yadda, much as we want to see improvements in Bryce's overall health and condition he is simply not ready for this harsh world just yet. We will hang on to a hope and a prayer, and a comment or two, that as the weeks continue to pass us by the small steps will accumulate and someday we'll be holding him again, looking back on these tough days as a distant memory.

Tuesday, June 30

Surgery Update

Bryce is snuggled back into his isolette in his home in the NICU - thank you, thank you, thank you for all of your prayers!

He's going to be pretty out of it for a little while, though it's hard to tell because, like his canine sister Sugar, he sometimes sleeps with his eyes a little open. We're once again glad to see him resting peacefully. His numbers all look good even though his new little bo-bo on his head makes my heart break. I'm just grateful to have him back in my sight where I can watch over him as I feel innately inclined to do.

By far the hardest part of the surgery today was watching him be wheeled away from me with his little eyes wide open. I know he must have been so scared by everything that was going on and I just want to protect him from that in any way that I possibly can.

Dr. George decided to do a subcutaneous shunt instead of a resevoir today. This will displace the CSF into the back of his head for his body to reabsorb it. We are happy with this because it means they won't have to keep sticking a needle in his head every other day. He usually spends the better part of a day restless and agitated when they drain the fluid - think severe dehydration or really, really bad hangover. This shunt should last a couple of weeks before it will need to be replaced with another because, like his ventricles, it will get clogged with dried up blood, clots, etc. and stop properly draining.

At some point in the future, odds are very great that Bryce will get a subgaleal shunt. This permanent shunt will displace the excess fluid to his stomach for reabsorbtion and will have extra tubing for him to be able to grow with.

Bryce needs to be about 2 kilograms (give or take some depending on how much of that is his head weight and how much is his body weight) for this procedure. It will be something that he will need to have checked about once a year for the rest of his life but should not hamper his ability to go about playing and growing like all of the other little boys.

We continue to be amazed by all of the wonderful people, both known to us and unknown, who reach out to us daily. And also by our family who put aside their many chores and worries to sit beside us day after day, to bring us food and laughs and silent comforts. We could not ever fully express our gratitude to each of you - your kind comments and gentle words remind us of the big picture here, when it is so easy to get bogged down in the details. Thank you with all of my heart. Thank you for me, thank you for Caleb, but most especially thank you for Bryce.

Prayer Request

Bryce's resevoir surgery is this morning. We know in our hearts that he will come out of this surgery better prepared to continue growing big and strong, that he will find relief in the days to come from the swelling and discomfort, that it will give him a chance to rest and recover. But still we are scared for them to take our boy away from us and ancy to get him back, safe and sound, as soon as possible.

They are ready for him right now (an hour and a half early) so I just wanted to ask for your continued thoughts and prayers during this time ~ we feel them and they help us to get through these scary times.

Thank you all so much!

Monday, June 29

Surgery Tomorrow

We are officially scheduled for Bryce to have his resevoir surgery for his hydrocephalus tomorrow. We are happy they think he's healthy enough for surgery but terrified by the thought of it. Hopefully it will make him more comfortable though as he was quite unhappy yesterday.

After trying to boost his pain medication and soothe him with a dark, quiet environment the nurses decided to let me hold him again as a last resort. It took him a moment but eventually I was able to calm him and he got almost two hours of rest on my chest.

Unfortunately, soon after putting him back in his isolette he grew unhappy again. I tried to explain to him that although I'd like nothing more than to hold him all day, everyday that is simply not a realistic plan. I tried to reason out a schedule with him where I'd hold him every day that they let me for as long as they'd let me if he would just try to get some rest when I wasn't holding him.

Since he wouldn't have any of my reasoning we eventually had to give him some medication to mildly sedate him. The medication is an anti-seizure medication, Phenobarbital, and it was the only other thing that could calm him. We strongly suspect that having the CSF tap yesterday was a big fluid change for his body and may have been what set him off. It's so hard to tell with these tiny little babies.

The neonatologist on for today said I could hold him again today!! Sounds good to me!

Sunday, June 28

A Perfect Day

Yesterday I was able to hold Bryce, skin to skin - aka Kangaroo care, for a full two and a half hours! It was the best time of my life and I'd have held him forever if they'd have let me.

Of course, it was quite an ordeal as he was still on his oscillating ventilator but Kathleen, his NNP yesterday, two of the RTs and Marissa, his nurse, worked diligently for at least half an hour to prep him for the move.

Caleb got some video and took a ton of pictures! Only he's so tiny against me and so bundled up to keep him warm that you can barely tell I'm holding him.

I was so proud of what a good boy Bryce was the whole time I held him! He mostly just slept, instead of wiggling constantly as he is known for, and seemed so peaceful. All of his stats were great the whole time and his temperature never really dipped so he probably could have stayed in my arms even a little longer.

It was the best feeling ever to have him against me, so calm and peaceful. I even thought to myself that I was so lucky because instead of him still being in my belly, where I couldn't see him or touch him, I was holding him in my arms.

After we got Bryce settled back in, which was quite an ordeal as he was not a happy camper about being put back in his isolette, we let Poppa babysit and I went home for the first time since Bryce came into our world.

It was a long trip and hard for me but I'm so glad I had the opportunity. It was good to see the dogs and Lexie and especially Megan, Brooke and Brett! I love those kids and their hugs help heal my heart.

It was also difficult to see that even though our lives have been turned completely upside down, the rest of the world continues to spin just as it always had. Our grass still needs water, the dogs still shed like crazy and Brett has grown a full head taller.

I mentioned to Caleb a week or two ago that I can't help but wish I had one of those magic remote control's like Adam Sandler had in Click . I'd pause the rest of the world and fast forward to us taking Bryce home, then unpause the rest of the world to sit back and enjoy a normal life. But as Caleb reminded me - you can't alter fate without consequences, remember what happened to Adam Sandler's character before he woke up from the dream?
Bryce doing well on breathing but began having seizures last night, doing a head ultrasound soon for neuro to review and decide plan for hydrocephalus