I felt incredibly frustrated today. Micah's sats regularly fluctuate between the 60s and the low 90s. The fluctuation has been totally stumping the doctors. Today his sats have been in the 50s and 60s. His worsening state is causing the doctors to: turn UP the oxygen and positive pressure on his breathing vent, give him new medication (atrovent) for what they THINK is bronchomalacia (weak and flaccid bronchial tubes), and give him what seems like the 100th red blood cell transfusion to help carry more oxygen in his blood.
For over a week now the doctors and nurses have been attempting to take Micah off his breathing tube. Everyday seems like the same thing, "His sats look great! Let's wean the vent" and "His sats are in the 60s, let's increase oxygen", "his levels are great again! Let's wean the vent" and "hm, his levels are troubling, we might need to get an ENT specialist to do a scope of his bronchial tubes"...
Now it's been about two days since they've tried turning off his vent to see if he can breath sufficiently on his own. I feel like we're going backwards. I feel like we're always going to be stuck at the hospital battling complications caused by something unknown.
Over the last week I've been feeling insanely jealous and heartsick when I see pictures of my friends with their healthy newborns. Their babies look perfect and beautiful. When I look at Micah, he is perfect and beautiful and I find I have to actively remind myself that he's sick and needs his team of medical professionals. It's still so unbelievable to me. Even with this reminder, everyday Ray and I say to each other, "I can't wait until we can bring Micah home."
I'd give anything to have him wake me several times through the night to eat, to change his diapers, give him a bath, dress him in baby clothes, smell his sweet baby skin whenever I want, hold him... Not only and I missing out on this time in his life, but he is missing out. This point in my life doesn't seem real.
I just need to work on being more prayerful, more thankful, and more patient...
Micah had his first open heart surgery when he was 12 days old, on June 11th.
In a nutshell, his surgery went fairly well and he's doing solid since then. He hasn't had any crisis moments since the surgery and he seems to be progressing at a good pace.
We had the most renowned doctor in the building on Micah's case. Dr. Jonas explained the procedure and the risks. Micah's surgery was on the far end of the spectrum for Tetralogy of Fallot patients. Putting a donated conduit (and valve) in Micah's right ventricle to connect to his two little pulmonary arteries had a success rate of about 90%. Laura and I like when doctors are straight up with the negative information. A few doctors (usually the genetic ones) will try to slowly ease the information on you, with worried looks and too many pauses for "do you have any questions?" Just give it to us straight. Laura and I are too far gone to get worked up about every piece of bad news. There's a saying "you can tell the size of a man by the size of the things that make him mad." Maybe it just feels belittling when someone is assuming that we're going to go for an emotional spin if they give us news about Micah.
Dr. Jonas debriefed us saying that Micah did well and that he found that Micah has only one coronary artery. Coronary arteries (usually there are two) are small enough to not show up in the echo and cath lab images. When he was telling us this information, it reminded me of a movie scene where someone imparts secret information, saying, "This will be well documented in the reports, but you must remember this information - as it will be critical to all of his future surgeries." In order to keep the 1 coronary artery in tact, he placed the conduit lower in Micah's right ventricle. I'm pretty sure that if something had damaged his coronary artery, he would have had a heart attack. Due to some swelling, they left his chest open after surgery. The image of Micah after his surgery - with tubes, swelling, pale and seeing his little heart thumping - is definitely burned into memory.
Prior to the surgery, we had a lot of ups and downs with is oxygen (and even his heart rate at one point). Because of this, his surgery was scheduled early. We found out that there aren't a lot of benefits to having the surgery later (say, 1 month old) instead of earlier. One of the doctors confessed that it's often most helpful to the parents, so that they aren't thrown right into worrying about their baby during surgery. We were also told that the day after surgery and the following days (or even weeks/months) could be very rocky. That saying "things will get much worse before they get better" keeps popping into my head. But, we've been with Micah each day, and even though it's terrible to see him motionless, puffy, pale, connected to more tubes, his blood flowing through tubes and his chest open - he seems to be doing really well. We're in an all out wait mode. Just happy to see each day go by as he keeps progressing.
The goal for now is to see his swelling go down and to close his chest tomorrow morning.
Even if we may seem tough and whatever, I know I've had a mental attitude of "don't give up" and "hang in there." At times, I've strove to turn the corner and be more optimistic, enthusiastic and joyful - because I know we need it, as a family and in general. It's very easy to be 100% present with Dylan - play with him, talk in his nonsense way about trucks, balls and water, read to him and get him to eat things other than muffins - but it's a lot harder with everyone else. Laura and I have our own ebb and flow of emotions, but we are supportive and understanding of each other. As crazy as all of this is, every day with Laura in my life is wonderful.
I haven't held Micah in like a week. The last time I saw his eyes open, I was on pins and needles that his oxygen would sink. He's basically in a coma and doesn't look like himself. I joking posted on facebook about how I love Micah's cry and how annoying other babies' cries are. Now I don't mind their cries at all. It reminds me of how much I would love to hear Micah's voice.
Today seems to be a good day for Micah. Thankfully a very aggressive doctor was on staff last night who was instant upon taking Micah's breathing tube out and starting bottle feeds as soon as possible.
I tried feeding him this morning and he isn't swallowing quite the same as before the tube went in. I think he has a sore throat. Poor little guy.
And the nurses... I feel like I have a love/hate relationship with them. Some nurses are way too hands on. They have to have the room set up a certain way, Micah has to be wrapped and positioned a certain way, they have to take off and reapply stickers and tubes to their liking, etc. the problem is that every time they mess with him, he desats. I had left the room for 30 minutes this morning to have breakfast and when I walked in he was recovering from desatting all the way down to the 20s!!!!?! Ugh. The nurse and respiratory therapist were like, "oh I don't know about feeding him today, not after that." But thankfully, the very aggressive doctor walked in and said, "just get him back up, we all know he desats when he's upset." And if course he came back up and was fine...
Then you have the nurses that are too hands off. Last night's nurse, for example, was no where to be seen even though Micah was her only baby last night. He'd start crying, causing him to desat, and another nurse would come in to check in him. What the heck?!
I feel like if Ray or I weren't constantly here they'd have him on all sorts of machines, tubes, etc. It's so frustrating.
Despite my rant, I'm so thankful for his current status and for the aggressive doctor... whose shift just ended :( ... I guess I'm just scared we'll have more set backs without the right people being around.
We love you, Micah! You're so strong!
- Laura
With everything going as it is, we wanted to get Micah baptized while he was still in the hospital. I figured this would be the case but didn't realize how it would add extra stress. On Friday, we had Fr Pollard battle traffic to baptize and confirm Micah. We barely got it in before the cath lab. Dylan's baptism was such a great day and big family event. Laura and I were there, along with my dad and older sister. I know that the baptism will give Micah extra graces and help ease our minds in any future super stressful situation (like surgery), but Laura and I couldn't help but be sad that it Micah had to have it this way - in a rush, with no mass, few family members and just a little syringe to trickle the water on his head.
In case you're wondering, we don't have his godparents figured out yet or his confirmation name - we would like him to choose that himself in about 13 years.
Micah and Dylan got to meet for the first time yesterday. Dylan had a sad look on his face. I'm sure he can understand that his brother is struggling through something. He touched his little toes and tapped his face.
Dylan will be a great big brother
- Ray
PS: Anyone want a free dog? We're seriously thinking about giving Luna away. It's so difficult to go back and forth to the hospital to be with Micah and also make sure we're spending enough quality time with Dylan. Luna is getting neglected :( and she takes up too much of our time that could be spent with our children. The whole situation is just unfair and heartbreaking.
Over the last two days the doctors have been contemplating cardiac catheterization (cath procedure) on Micah. A cath procedure is when the doctors insert a catheter through his arteries to the chambers of his heart. The doctors (I think) can measure oxygen levels of each chamber, identify collateral/pulmonary arteries that can't be seen via sonogram, identify blood pressures, etc. They decided they needed to perform a cath because he isn't "following the books." Typically children with this disease can be weaned off PGE soon after birth and they struggle with above average oxygen saturation. Micah is the opposite. He is still on PGE and his saturation levels are still too low.
The doctors wonder if the PGE is causing him to have low blood pressure. They also wonder if his ventilator is causing mucus buildup in his lungs. Both can affect sat levels and might explain his current situation. The cath will at least explain the blood flow to the lungs.
Over the past few days, based on the amount of oxygen adjustments and going on and off the PGE, perhaps we should have realized that the doctors are unclear on why his stats are low. Dr. Donofrio even mentioned that babies with Micah's heart condition often have high oxygen levels (in the mid 90's, not low 70's). It's troubling for us to realize how mysterious his situation is. It's really difficult to think about how there are a number of procedures/drugs that are keeping him stable, yet it's hard to say exactly why it's working or not working. It's all so
fragile.
He's scheduled for his cath procedure between 4:30-5:00pm tonight.
Also, we're having Father Marcus Pollard stop by to baptize Micah before he goes in for his cath. Though we'd prefer to have all of our closest family and friends present for such an occasion, we're so thankful he is taking the time to come to the hospital.
Micah has been doing really well these last two days. He's been maintaining good oxygen saturation (sat) levels and the doctors even wanted to try weaning him off of his prostaglandin (PGE) again.
He was scheduled for an MRI this afternoon at 4:00p. By the time we transported little Micah, he kept desatting (decreased oxygen saturation). They cancelled the MRI and we took him back to the CICU. He continued to desat and before I knew it there were 11 nurses, doctors, and techs in the room. The ICU doctor told me they wanted to intubate him...
😔😢 and there is our set back.
I feel like the situation escalated so quickly. I didn't foresee this at all when they told us he was scheduled to have an MRI. All I wanted to do while he was desatting was to comfort him. But he was being poked and handled by everyone and his crying only got worse and worse.
Now he's peacefully resting with a large tube up his nose and down his throat. He's still so beautiful with all of his stickers and tubes.
These last four days have been the longest 4 days of my life, I think. I don't know how parents of sick children keep sane. I was starting to feel better about the situation but now I'm back to feeling sick with sadness and worry.
I spontaneously gave birth to Micah on the Saturday morning of May 31, 2014 at 5:54am. I was 37 weeks and 3 days along when he arrived. He weighed 7lbs 2oz and was 19in long! He has the biggest cheeks I ever saw! Labor lasted about 6 hours and I felt really good afterwards! Micah was born pink and not blue (yay!) and Ray and I got to hold him before the NICU team took him away.
I've been sending out email updates to family over the last few days. I've posted them below for all to see how things have developed over the last few days. It's been really emotional for me and Ray. I can't describe how helpless I feel seeing Micah's little body fluctuate between what is considered "good" levels and "dangerous" levels. It was a comfort to have him in my belly knowing that he wasn't struggling. And now we're facing the reality of it. I have to admit, it's not as terrible as I thought it would be, maybe I'm stronger than I think.
***
(May 31, 12:05pm) Hi family,
I'm sorry we haven't been very frequent with updates. Ray and I were able to hold Micah right when he was born. The NICU doctors said he had trouble breathing so they intubated him. Micah is with Ray at Children's Hospital (right next door to Washington Hospital Center where I'm staying). The cardiologists don't seem too concerned with his breathing. They said it could have been from fluids during the birthing process. If everything seems to be going well then they'll take the tube out later today. Micah is just now getting his echocardiogram so we should know a bit more about his heart condition soon. Here are a few pictures that were taken soon after he was intubated.
Love you guys so so much!!!!
Update (May 31, 2:30pm):
The echo confirmed no pulmonary artery (PA) but they see three other collateral arteries that are trying to make up for the function of the PA. They're going to take the tube out and see if his oxygen levels stay above 70. They're currently at 81. If levels are stable then we'll try eating and if that's successful then we might get to take him home. Lots of ifs at this point.
Update (June 1, 1:00am):
They extubated him at 11:30pmbut he's still on oxygen - his oxygen levels are at 92. He's currently asleep and sucking on a pacifier! They're going to try feeding him around 3:30am.
Update (June 1, 9:30am):
I called Children's around 4:00am. They fed him 8cc (not very much). The nurse said that's all he would take and it's to be expected since he had really busy first day of life.
They tried feeding him again at 6:30am and he didn't seem interested in eating. He only took 2-3cc. So they're going to keep trying throughout the morning. He appears to have a good sucking and swallowing reflex (I hope they're right!). He's still on an IV drip to stay hydrated and to receive glucose.
His "normal" oxygen saturation levels is between 75 and 85 but when he cries it drops to 60 which is lower than they'd like to see. For normal anatomy, oxygen levels are usually between 93 and 100.
I get discharged today at lunchtime and I can finally be reunited with my baby! I haven't seen him in over 24 hours :( I'll send new pictures now that he doesn't have tubes in his throat anymore.
Update (June 2, 11:30am):
Hey everyone! Spending time with Micah yesterday was amazing! We had a scare at one point, his heart rate randomly dropped to 60bpm and it's supposed to be between 110-160. It hasn't happened again since
This morning the speech therapist came in to assess his feeding abilities. He drank 15cc and passed the assessment! I can even breastfeed if I want :)
Update (June 3, 7:50am):
Yesterday the doctors held a surgical conference at 4:00pm. Our cardiologist, Dr. Donofrio, briefed me at 6:30p stating that they were going to take Micah off the prostaglandin (medication to keep certain arteries open) and if he was able to maintain his oxygen level then we could take him home soon and fatten him up before his surgery (which will take place when he's about a month old).
Well, they took him off the prostaglandin at midnight and his oxygen levels slowly decreased. By 6am his levels were between 60-65 (their goal is 75+) they put him back on the prostaglandin... So I'm not sure what that means as far as going home or staying in the hospital. The good news is that he's eating a pretty good amount every 3 hours, which I'm really thankful for.
