heads i win, tails you lose

When you decide to have a baby, you're really just flipping a giant coin, or rolling a giant set of universe dice. If you're lucky, like so many of us, you get a mostly perfect baby with no outward signs of dysfunction. If you're not so lucky, like so many of us, you get a baby with some serious problems.

We are about to be placed on the OR schedule for placement of a permanent gastrostomy tube. It is the only way my baby can come home and eat safely. Part of the surgery will also tighten the sphincter muscle in his tummy so he will not reflux and choke. I watched him do that very thing yesterday and he turned blue right in front of me. It was horrifying.

I hate this. I hate it so much I can barely breathe. Mostly I hate that if I say the words "feeding tube" people will think I have a disabled baby or something, and I DO NOT. My baby is so beautiful and perfect and I love him so desperately...and I don't want anyone looking at us with pity. He just can't eat. And right now I will do anything to get him out of that NICU. To get him away from the many, many doctors who come in and poke and prod him every damn day. He needs to come home and be loved and cuddled and held and played with, and yes, fed through a stupid old tube into his belly so he can grow and get strong and hopefully show all those stupid old doctors that he will be just fine.

more stuff about my baby

I just want to say that I do not write these posts fishing for comments...but that all the amazingly kind and supportive words you've shared over these couple of weeks have meant so much to me. It sounds cheesy and trite, but it's true. I find that I can relax a little, knowing so many are lifting us up in prayer and hope.

This has been one of the most stressful weeks of our lives, and oddly enough, we have come full circle. Our son was admitted to his current hospital one week ago yesterday with feeding difficulties, and he is now hanging out in the NICU...with feeding difficulties. But God is good, people, and don't you forget it - each day of this harrowing week has allowed us to tick one more horrifying potential diagnosis off the list and move forward. We have now found out that our baby's brain is not damaged, he can see (the O.T. examined him and confirmed he tracks visually, thank you Lord), and despite having "low tone" he moves his body in typical newborn fashion. The only somewhat scary thing that is still up in the air is his hearing. They attempted to do their more sophisticated test more than once but he kept waking up and ruining it, so it was finally completed yesterday. We'll find out the results soon.

There are specialists beginning to work with him on feeding once again - they have confirmed he can drink from a bottle (which we already knew but they did not) but the milk collects in his throat at times and he becomes uncoordinated, causing him to choke. They haven't let me nurse him again - yet - but I think it's coming soon. He tends to do better with nursing because he can pace himself more naturally than when he is given a bottle. Also, he gets a better latch, probably due to the size of a human nipple as compared to a smaller bottle nipple.

Bear with me - I'm just trying to chronicle some of this stuff. And please, if you would, continue to keep us in your prayers. It is working, we are so blessed. Thank you!

my son, the enigma

Our son's MRI came back looking normal. So thank God for that. The doctors let us know yesterday that they were pretty sure something was going to be abnormal in his brain stem, but the radiologist said if they hadn't told him what they were looking for, he would have questioned why they were having the MRI done at all. The scan wasn't good enough to see the exact cranial nerves they wanted to check out, because babies are too small (and therefore the nerves are too small to be seen). But his brain looks fine.

So we're still nowhere on the gag issue, and they are worried about his hearing because he failed the very first hearing screen (last week at the first hospital) bilaterally. His optic nerves are present and we believe he sees, but we can't be totally sure about hearing. So that was redone yesterday after we left for the day and we will hopefully find out some results today. However, his hearing is not my main concern - if there is a problem we have lots of options (and I am not convinced there IS a problem...I swear he responds to our voices and when Daughter came to read him a story the other day, he perked up, opened his eyes, and looked right at her when she started reading).

Basically right now we have the world's most expensive day care (and night care) - all they are really doing with him is feeding him through the teeny tube that goes down his throat. I spend all of my time either at the hospital holding him, home pumping breast milk to bring to the hospital, or spending time with Daughter so she doesn't start to hate us and resent her baby brother for taking so much of our time.

He looks so beautiful and perfect - I am so frustrated that I can't just bring him home. The doctors won't let us even try to feed him (via bottle or breast) because they don't want to put him in danger. The neonatologist heading up the team (who happens to be the father of some kids I went to high school with: cue "it's a small, small world") sat with us for a long, long time yesterday discussing our son, and he basically threw up his hands and said our baby is an enigma. A medical mystery.

So we drive back and forth. I hook up to my Medela. And we wait while more specialists are called in to see if someone, anyone, can figure out what is wrong with my baby.

prayers needed

I'm sure everyone thinks I haven't posted because I'm busy at home with a new baby...and I wish so much that that were true.

Our son was born in some distress, and his respiration was too rapid for the first several days for him to feed normally. He was on an IV for a couple of days, then went to a feeding tube through his nose, then to bottles, and finally I was able to nurse him. I went home after 4 days, he stayed in the NICU. We drove back and forth twice a day at two of his feeding times so I could nurse him and we could hold him and visit.

The problem is that my baby lacks a gag reflex and if he either burps up milk or gets too much in his mouth at once, he can't choke and clear it himself. The nurses had been able to solve it with suction and he was getting better at recovering from these episodes, until the other night when a nurse was feeding him and he choked so badly he had to be put on a ventilator for recovery. Luckily he did not aspirate much of anything and was taken off the ventilator after a few hours.

On Friday he was transferred to a different hospital with a more sophisticated NICU and a billion specialists. We've watched as geneticists and neurologists have poked and prodded him, and waited very impatiently for the doctors to allow him to eat again (he went back to IV only after the ventilator incident). They have finally allowed it, 5 ml at a time, again through a tube. He was taking almost 50 ml per feeding before, or nursing a full feeding. Watching him cry with an empty tummy almost killed me.

My baby looks perfect. He breathes fine on his own, nurses successfully, cries, kicks, waves his arms around, fills diapers, coos, and snuggles into me when I hold him. He is in most respects a normal, healthy, gorgeous baby. But something in his craniofacial nerves or musculature is not right, and we need to find out what it is and fix it before he comes home. Sometime between now and Monday my sweet, tiny boy will be sedated and given an MRI so we can see his whole brain/nerve structure and hopefully get an answer to what is causing him this problem.

I don't know what I did wrong, if anything, during my pregnancy. I don't know what my child did to deserve this. I don't know what I did to deserve this. I'm so frustrated, and sad, and very frightened for my son.

So if you wouldn't mind keeping up the prayers for my little family, and mostly for my little boy, I would truly appreciate it.

the new man in my life

Our sweet baby boy made a grand and frightening entrance into the world on Tuesday, September 2, 2008 at 7:56 pm. He arrived via emergency c-section and weighed 6 lbs, 6 oz.

He's still at the hospital in the special care nursery (code for NICU) due to some rapid respiration and feeding issues, but is improving hourly and we should have him home soon.

Loooooooooooong story and a photo to come. Suffice it to say he is beautiful and perfect and we are so, so happy.

Thank you all so much for the love, support and prayers.