So tomorrow Levi will have been home for three weeks now!
Here’s a summary of everything that went down for the last few weeks in a nutshell:
After the last surgery the Dr. said she was 50/50 on whether or not she even fixed the problem, but as time went on he seemed to be getting better. It did however take a week to get him off the ventilator and breathing on his own. Each surgery it has taken longer.
After he was showing signs that it was ok to let him eat, we started with an “elemental formula” (Josh said, “What like air, fire, and water?” lol!). It’s a formula that’s broken down into its most basic form so it’s easier to digest. It smells awful though. But he was tolerating it. We started slowly and got him up to taking about 40cc each feeding. Then all of a sudden he started only taking about 25cc at each feeding so Dr. C felt it was time to put the NG tube or “cor-pak” back down his nose so we can be sure he was getting his full nutritional requirements (which at the time was only 75cc per feeding). I didn’t want to do that. I wanted to give him more time but I was told that it was imperative that his broviac come out because the longer it’s in there, the higher the risk of infection and it’s been in there too long already, so I agreed to it.
Immediately after shoving a tube down his nose and throat, he went down to only nippling 5cc at each feeding. We started over, again. We worked and worked and worked with him on feedings. Each feeding was so stressful and anxiety inducing. We tried changing the bottle, the nipple, the formula and whatever else we could think of. I wrote a bit about that here. Again we got him up to 25-30cc but he just stayed there.
Finally one day the Dr. felt it was time to switch him to pumped breast-milk. Immediately he started taking about 60cc at each feeding which was about twice what he was, but while I was giving him his first bottle of breast-milk, Dr. B tells me Levi needs a surgically inserted G-tube in his stomach and a fundoplication. He tells me the surgeon is ready to do it Friday (I believe this was on a Tuesday) and he’s already requested the test necessary before the procedure.
I started sobbing.
One of the nurses showed me on a doll what the G-tube looks like and I was terrified. It looked like the air plug on a blow-up pool toy just hanging out of this babydoll’s belly half way between his belly button and his hip…not exaggerating. I knew I wasn’t ready for that, but I couldn’t even form my logic around why yet, so I asked for a “care conference” on Thursday. In the time leading up to it, some of the nurses tried to talk me into it. They kept telling me that it was “so easy” because Levi can just nipple whatever he wants during the day and whatever he lacks, we can just slowly pump into him all night long while he sleeps. Then we can all sleep through the night. The Dr.’s kept trying to talk me into it saying that Levi had Down syndrome and the G-tube was the only way we could go home.
During the care conference I was terrified. There was an entire group of professionals consisting of several nurses, the Dr, a physical therapist, Josh, my Mom and me. I often lose my nerve in front of intelligent or knowledgable individuals and here I was, disagreeing with a group of them (It turned out the nurses really had my back which was nice).
Dr. B said Levi had formed an oral aversion so he was afraid of anything coming near his face so the NG-tube down his nose was making that worse and if we leave it in there he may quit eating all together. I said that it simply wasn’t true that he had an oral aversion because he loves his pacifier, he loves to suck down one of the medicines and sucking on a finger. The physical therapist said he has a “swallowing aversion” probably caused by the NG-tube and that he was too uncoordinated to eat. So I said that’s why I didn’t want the NG-tube in the first place but I was told it was imperative because the broviac needed to come out and yet now we are leaving it in for the surgery for the G-tube to treat the problem cause by the NG-tube I didn’t even want.
Also, when they did the test to see if Levi had reflux and needed the fundoplication, the Dr who did the test said he couldn’t understand why they were doing it. He said, “He has an NG-tube in his esophagus. Anyone with a tube holding the esophagus open will have reflux. I can guarantee you he will have it.” One of the nurses told me that the fundoplication makes it hard for them to EVER throw up or burp and the best way to burp them is to just open the G-tube and let the air come out. She said she knows a boy with the fundoplication and he was seven before he ever threw up. When he would get sick it would all HAVE to come out the other end because he literally just COULD NOT throw up.
When I asked if we could do just the G-tube and not the fundoplication since his reflux was most likely caused by the NG-tube, Dr. B said no because they always do one with a G-tube. So I’m still not sure why they shoved ridiculous amounts of Barium down his throat to MAKE him throw up, just to support the argument for a surgery to prevent him from throwing up that they would do even if the test had shown that he wasn’t throwing up because that’s just what they do with a G-tube…
I just couldn’t find any reasons good enough to justify another surgery. Another period of not eating while he recovers. Another time of starting completely over on feedings. Especially since after each surgery it took longer and longer to get him to breathe on his own, the last time taking a full week!
So the nurses suggested giving me a 24hr period with no tubes to feed him and see what happens. Dr. B agreed and also agreed to let us have the week to continue to work with him and then we would meet and “re-evaluate” after that time. During that week the required amounts went all the way up to 110cc at each feeding (to keep up with calorie requirements for his weight as he grew). Whatever he wouldn’t nipple was slowly added to his stomach through the NG-tube. What was fascinating to me was that 110cc was how much the Dr who did the reflux test gave him to MAKE him reflux. He called it “Thanksgiving Full”. I still don’t understand why they are forcing amounts on him that don’t really even fit in his stomach because of some mathematical equation of the ratio of body size to calorie requirements for growth.
This part still frustrates me. I’m trying desperately to get him to eat a certain amount and it’s a lot. Then, last week I take Levi to his pediatrician appointment and they give me a sheet (that is given to every parent) that says, “Don’t try to force you baby to eat a certain amount if he is not hungry. He will lose the ability to know when he’s full and he will over eat as an adult”. When I was in the hospital one of the nurses told me this is something children and adults with Down syndrome struggle with. Maybe they struggle with knowing when they’re full because as babies they are forced to eat a certain amount to fit a growth chart of babies without Down syndrome. Just a thought. I really don’t know.
Anyway, I cried a lot that week. Levi always seemed to fall just a little bit short on the requirements and I thought for sure they were going to really push me into this G-tube I didn’t want. I called on an amazing friend of mine. She has an adult daughter who has Down syndrome (and who just got married-Congratulations honey!) and she came to talk with me for a while. She encouraged me and refreshed me more than she’ll ever know. Plus the amazing comments and prayers from you guys kept giving me new waves of strength. She got me a couple of phone numbers for Doctors who specialize in Down syndrome. Being that I know so very little about it since I am just starting on my journey, I wanted to talk to someone with experience in this area. I wanted to ask someone if I was being unreasonable in expecting Levi to get the hang of it, if given enough time.
One of them, Dr. H called me back, got the whole story then called the NICU Dr. L and spoke to her. He spoke to her right before the meeting, so I never did find out what he said to her, but what he said to me was that he was not a fan of the G-tube unless absolutely unavoidably necessary. He said, “The Dr.’s job in the NICU is to get your baby healthy enough to go home in whatever way that requires, but they don’t see these kids with the G-tubes years later, I do”. (I later told Dr. L that I didn’t intend for him to call her. I wasn’t “sicking” him on her. She said actually it was great that he called because now the hospital has a new contact for a Down syndrome specialist who is on the cutting edge of what’s new in health care for Down syndrome!)
Another thing I could never understand is why they wouldn’t let me take Levi home with the NG-tube. I kept telling them I KNOW I could manage it if it fell out but they just kept saying, “I’m sure you could, you seem very capable but that’s just not how we do things here”. Uh? Well there is really no counter argument to that now is there? (I also later heard a story from a friend about a baby who went home with a G-tube and when it fell out the baby died…Uh…I am pretty sure if an NG-tube falls out, nobody dies so whyyyyyy can’t I take him home on one?)
But while all this is going on-Josh quit his job. He does work on the side and it was/is doing so well there was really no need for him to keep his day job. He quit on Friday and on Wednesday he received news that a remixed song he had entered into a competition weeks ago had been hand selected by the world famous DJ Sasha! He and 13 others were headed out to Ibiza, Spain next week for 5 days of coaching from some big names in the industry. I’m kind of inclined to say that was God’s timing (He was the only one from the U.S. chosen so he had two full days of travel too-and I think it should be pointed out that when he first found out he said, “Oh wow that’s so awesome! But obviously I’m not going since Levi is still in the hospital”. And I said, “What?! Get your butt on that plane! This is a once in a lifetime opportunity!” And it really took the nurses convincing him they would take good care of Levi and I while he was gone before he fully committed to going).
So the Friday after we found out he was going was our next care conference to talk about Levi’s progress that week. I was a nervous wreck because I knew he had fallen short.
We got into the meeting and Dr. L quickly said that in the last week Levi had changed their minds. While he was still a bit short, he had improved sooooo much in one week that they were ready to put the idea of a G-tube on the back burner for now. She said, “We need to keep in mind, he’s only been eating for three weeks of his life and we are asking him to eat amounts for a baby two months old. He needs more time to develop the muscles and the stamina”. I was so relieved I was actually in a bit of shock.
Oh! And also, right before this meeting the Cardiologist had stopped by and said that his pulmonary hypertension was gone! She wanted to ween him off of the medicine by letting him grow out of the current dose but he didn’t need to be on oxygen anymore! That was truly a miracle of God and I cried at the news. I was told he would go home on oxygen and probably be on it for at LEAST six months and here he was at two and a half months old, healed!!
A few of the sweet nurses told me Levi was lucky to have a Mom who advocated so hard for him and I know everyone was happy for him. After the meeting Dr. L came and asked me if we had tried breast-feeding. I had told her that we had after the first surgery and it didn’t go well. I know too that a lot of babies with Down syndrome struggle with breast-feeding. She suggested we try it again just so that we have really tried everything.
He did splendidly with it right away! He impressed and surprised everyone and showed us what was up! lol.
So that was the key.
Josh left on Sunday for Ibiza and I started working with Levi on a combination of breast-feeding, bottle feeding and gavaging through the NG-tube whatever he couldn’t do when I wasn’t there. It started to become apparent that the breast-feeding was a necessity so I stayed 24/7 in his room in a TERRIBLE recliner. It wouldn’t stay reclined unless I was holding it there so as I would fall asleep, I would slowly sit up! lol. But I really felt like I was sprinting around the last bend of this race and if I just really pushed it and gave it all I had, it would finally be over. Since I was staying overnight we were able to take out the NG-tube and see if he could still gain weight without it. After a few days in a row of him gaining weight, the nurses and I felt it was finally time for him to go home. He was happy and healthy.
By this point he had become quite popular in the NICU! He was healthy enough that he didn’t need to be hooked up to the monitors all the time so the nurses would all come by and take him! They would carry him around on rounds and take him to the windows to look outside. It was so amazingly sweet the way these girls gave a piece of their hearts to him!
But Dr. C felt she needed a few more days of weight gain from him before he could go home. The nurses talked her into letting me stay in the Mom and Baby wing of the hospital with Levi. This is where most Moms recover from delivery with their baby but I didn’t have my own nurse. Levi’s nurses took EXCELLENT care of us both though and I finally for the first time in probably six months got a few hours of a deep sleep because things were looking up.
On Sunday, July 31st Levi came home from the hospital and a few hours later Josh came home from Ibiza. It was really amazing to have my whole family home! It was really like in one week we managed to turn around this giant cargo barge and now that we were headed in the right direction, things were never going to be the same! It was really thrilling.
A week later Josh and I found the perfect house for our new family of four and last Thursday we moved. Life has been CRAZY. Learning to manage “two under two (years of age)”, helping Jayden cope with the new brother and the new house, unpacking and still carefully monitoring Levi’s eating and weight gain has been an adventure to say the least but one I am ECSTATIC to be on! Levi has a lot of Dr. appointments as everyone wants to make sure he is doing well at home. Today he met with the cardiologist again. We will be taking him off his medicine for that slowly over the next couple of weeks. The hole in his heart is repairing itself. It still has a bit to go but it is apparently improving!! He does have a slightly stuck valve but the Dr. said it won’t cause any problems until he’s 50 and even then it may fix itself or never cause any problems at all. If we want to fix it they can do it without a surgery (something about a tube and an air filled bulb-I don’t know! lol).
Levi really has been miraculously healed and it was because of the thoughts and prayers of you guys. Josh and I kept talking about how Jesus healed the paralyzed man because he saw the faith of his friends. Even when we were weak, we knew we had your strength and faith behind us, holding Levi up to God. When Levi was born he had intestinal issues, lung issues, kidney issues, and heart issues. And while things like removing his misplaced appendix and repairing his broken intestines were done by the hands of the Doctors, the other issues just healed! I am reasonable enough to even allow the admittance that maybe he just grew out of some of them but I will insist that he was allow the time on this Earth to grow out of them by a God who healed him. After the third surgery the Dr wasn’t even sure she had fixed the problem. He had lost so much blood leading up to it that he needed two transfusions. But he quickly showed us that he was healed, to the relief of everyone who had played a part in his rescue.
And while I have said a thousand “Thank You”s to those who prayed I want to also say a big “Thank You” to those who didn’t because of their own personal beliefs. Even though you don’t believe like I do, you never once mocked or belittled my faith or tried to convince me I was wrong for having it. Thank you for that! It truly means a lot more than you know!
I want to thank the Nurses and Doctors who gave our family so much of themselves not just to save his life but to give us hope.
I want to thank Josh and our families for their unbelievable support, we could NOT have survived this without you.
And I really want to thank my Mom! Mom, you were amazing through this whole thing. I think you sobbed as much as I did and yet you never stopped fighting for Levi with me. I really absolutely could NOT have done this without you!
So now the next step of our journey continues. He still has some sensitivities and gets a bit of blood in his diapers every now and then. We have an appointment with the GI specialist tomorrow. He still has Down syndrome and it’s still something I don’t know enough about yet. Early Intervention Colorado came by our house yesterday and they are going to help us get set up with the therapists Levi will need. I will continue to blog about these experiences. That was the original purpose of this blog, to share my journey as I discover Down syndrome, but it ended up being a story about a family’s survival and a baby boy’s fight for life.
Thank you God for blessing our lives soooooo much with this precious gift and my two AMAZING baby boys!
Lastly, we are having a “Come and Meet Levi” party. Everyone is invited but please RSVP so we know how much good food to get!! Email me for the invitation/directions/time information.