Tuesday, June 15, 2010

Wyatt's first week the hardest week of my life.

Wyatt's first week has been much harder then I ever imagined it would be. It is not Wyatt's fault. He is an amazing baby. Wyatt sleeps well, eats wonderfully, only fusses when hungry, he is a very calm and alert baby. I was worried that Wyatt would be a hard baby because Bryan was such an easy baby. But Wyatt is easily following in his big brother's foot steps. Unfortunately our trip home was short lived and utterly ruined before we knew what was happening.

Wyatt and I were both doing great on Wednesday. My OB preformed an exam on me and said that I was healing well. He said that a lot of repeat c-sections heal faster and are able to go home sooner then first time mommies. I was doing just fine and he gave me the ok to go home when ever I was ready. Wyatt was examined by the pediatricians and also given a clean bill of health and the go ahead to go home a day early. We got all checked out of the hospital and gladly went home in time to meet Bryan when he came home from school. I was so happy to finally have my family of four together. Seeing Bryan hold Wyatt in our home, on my own couch brought tears to my eyes. I was finally seeing the dream that I had dreamed for the last 12 years coming true. I had a safe home, a supportive husband and now two beautiful children. What more could I have ever asked for?

But the joy was short lived. We were contacted by a Genetic Specialist from Mayo. He told us that one of the test results on Wyatt's newborn screening was elevated. It is called VLCAD and is a metabolic disorder that makes digesting fatty acids and using them for energy difficult. He wanted us to go to the ER immediately so that he could get a blood sample to rerun the test and so the doctors could do an exam based on the new information. He said we would be in and out in no time. So after only 4 hours home we rushed Wyatt to the emergency room.

I will try to make a painfully long story as short as possible. Wyatt is extremely difficult to get blood drawn from. It took a very long time to get a sample. They also did a blood glucose test as one of the symptoms of VLCAD is low blood sugar. I had been taking a nap when the doctor contacted us and it took so long to get the blood drawn that it had been several hours since Wyatt had nursed. His glucose reading was low. They gave us a small amount of time to nurse before taking a second glucose reading. After the drama of the blood draw Wyatt seemed to shut down and try to sleep. I was unable to get him latched on to nurse so that he could get anything in his belly. So of course the second glucose reading was also low. The doctor insisted that we get an IV into Wyatt immediately and start giving him glucose water to raise his levels. They spent nearly 2 hours attempting to put an IV in Wyatt's arm but were unable to get one in.

We were admitted to Pediatrics were they inserted and NG feeding tube in through Wyatt's nose. They administered 3 ounces of glucose water into Wyatt's stomach every hour. As you might have guessed between the trauma of the blood draw, attempt at the IV and the belly full of sugar water Wyatt had no urge what so ever to nurse. It had been hours since he had any breast milk. His numbers stabilized some but still were not good.

Thursday after talking to the genetic specialist and the pediatricians we were talked into letting them try the IV again. We did NOT want the glucose water to begin with and had already said no to the IV once before on Wednesday night. They were able to get a nurse from the NICU to come and she thankfully was able to get the IV in after 2 tries. Wyatt has jaundice and the doctors decided that since he was spending another night in the hospital then they might as well put him under the bililights in order to help bring his bilirubin levels down. At one point poor Wyatt had an NG tube in his nose, an IV in his hand and was naked under the lights in the bassinet. It was the most heartbreaking sight I have ever seen. It was like a nightmare.

While Wyatt was on the IV he finally was able to eat something. But he had no energy what so ever. Wyatt laid their in our arms, barely eating, not crying, not responding to touch or to pain. He was just there. Our healthy, happy, alert baby that we walked into the ER with on Wednesday had turned into what looked like a little kids limp doll by Thursday. The IV made it so he was able to start eating again but he was not strong enough or alert enough to nurse. I had started pumping breast milk Wednesday night and we were feeding Wyatt bottles of my breast milk instead.

After much argument we were able to convince the doctors to try to wean Wyatt off from the IV glucose water so that we had a chance in hell of going home anytime soon. They cut the amount in half and his glucose level dropped. It fell a lot but was still in the normal range. The over night doctor told me that he wanted to raise the glucose back up to full force. I told him no that Ethan and I did not want him on the glucose water in the first place and that we would not turn it back up now. I tried to convince him to give me an hour to feed Wyatt and recheck his glucose levels. If they still were low then we could turn the glucose up again. He said no it needed to be done now. I told him that I would not make the decision with out speaking to my husband. This was OUR son and it was OUR decision to make not mine. I wanted to call Ethan and ask him what he wanted to do. The doctor told me that we did not have time and if I waited to talk to my husband I would kill my baby. Yes you read that right. He told me that I was KILLING MY SON. I told him to leave NOW and I called Ethan to come back to the hospital. Ethan did not want to leave us there at all. But he needed to leave to get Bryan and go home. Poor Bryan's life had also been thrown into a tailspin and we wanted to at least get him home and in his own bed before school the next morning. Ethan had not even made it out of the parking ramp before I called him back in.

The doctor came in as soon as I hung up with Ethan and tried again to tell me the damage I was doing to my son by waiting. I threw him out of Wyatt's room so fast I don't think he knew what hit him! Ethan came back in and the doctor came to talk to both of us. We stood firm and told him that we never wanted the glucose water to begin with. That no one had listened to anything we said and just did what they thought was the right treatment. We told him nothing about this felt right to us. We just wanted to give Wyatt the chance to stabilize his blood sugars on his own with the help of breast milk. We told the doctor how angry and disappointed we were with his behavior and the care we had been receiving since we walked into the ER Wednesday night. I told him I had never been more insulted in my life then I was by his accusations that I did not care about my child and that if he died it would be my fault. He had no idea the hell we have been through to finally have this child and he could never understand what being Wyatt's parents meant to us. He did apologize but it is still little consolation to me.

He finally agreed to my first idea of feeding Wyatt a bottle and giving it an hour. I am sure much to his surprise Wyatt's glucose levels jumped up to the 70s. He held stable there and they slowly cut back the glucose levels through out the night. The less sugar water they pumped into him the more breast milk he drank. The more breast milk he drank the higher his glucose levels were and the more he returned to normal. We had a few levels dip down low again every time they cut back the glucose water. But Wyatt was always able to return to a high level again in 2 hours for the next reading.

Friday morning they unhooked the IV and he was on just straight breast milk. His bilirubin levels had come down some and they allowed the bililights to be turned off. It was so nice to be able to hold him again for longer then the amount of time it took to feed him a bottle. All we wanted to do was hold our son and we could not do that all Thursday night. That just made everything harder to deal with. They took 3 glucose readings after the IV glucose water was turned off and Wyatt was taking in only breast milk. All three of those readings were nice and high. They finally gave us the ok to go home. You could tell that they did not want to let us leave but no longer had a valid reason to force us to stay against our will. Which is what they had been doing since Thursday morning. There were some stipulations to us going home. Wyatt's glucose needed to be checked every 4-6 hours. Thankfully I have a meter at home and am trained in taking blood sugars. Wyatt needed to be fed every 3 hours or less. Even if that meant waking him up and forcing him to eat something. Easy things to do in exchange for the chance to go home. We were finally able to pack our stuff and go home at 4pm Friday.

They took large quantities of blood from Wyatt to run all kinds of tests. At one point his arm was taped down to a board while nurses surrounded him holding him still, getting an artery stick to draw blood from and three nurses handing off empty tubes as the filled the other ones. They did an echo cardiogram and an ECG to check his heart because the thought they heard a heart murmur and because VLCAD can cause heart issues. I have a heart murmur so it would not be far fetched for him to have one too. Wyatt does NOT have a heart murmur. Thankfully that is one less thing to worry about. They ran the test for VLCAD three times. All three times they did not get a positive result. The geneticist says there is something there but he could not figure out what it was. He called the man who designed the test and spoke to him about Wyatt's results. The maker of the test says that Wyatt does NOT have VLCAD or one of the lesser forms MCAD. He is not sure what his test results mean but he is sure that Wyatt does not have the disorder that the newborn screening read as high.

We thankfully got to spend some time at home over the weekend with Wyatt. It was extremely hard to relax after everything we had been through. But at least we were home. I finally realized that oh ya! I just had a baby and a c-section and had fallen behind on my pain medications a few times over the last few days. I was so worried about Wyatt and what was happening to him that I must have blocked out my own pain and the need to heal. I spent most of Friday night just laying in bed and crying from the pain. The pain medication I was given at the hospital was not working. Ethan rubbing my back was the only thing that calmed me enough to get any sleep. My recovery has become a little slower then it had started out because of all this. But at least I am healing now.

Bryan came home Sunday night and I thought for sure I would start sobbing when he walked through the door. I had missed him all week and was sad that he was not home over the weekend when Wyatt came home. I can not explain to you the feeling of happiness and relief to finally have both my sons home with me and my husband. Our family of four was FINALLY home all together at the same time. For more then 4 hours!

Tuesday we had check up appointments for Wyatt. First we saw our Family Med doctor. He has been my doctor since I was 14 years old and Bryan's doctor since birth. He is calm and comforting and it made me feel safe to have him take over Wyatt's care from here on out. I know that he will not over react and blow things out of proportion. He is a very level headed man. He checked Wyatt out and gave him a clean bill of health. Wyatt's skin and eyes looked good and he did not think it was necessary to run another blood test to check his bilirubin levels. His hip still clicks from being breech in the womb. We will have to look further into that with an ultrasound. But it is an easy fix and should not cause Wyatt any problems down the road. Wyatt is one week old and has already regained the weight he lost after birth. The doctor said it usually takes a baby 2 weeks to regain that weight. So Wyatt is well ahead of that and obviously eating well. He poops and pees like a champ. Normally they see like to see newborns at 4 days, 2 weeks and 2 months for check ups. Since we were in the middle of that 4 days and 2 weeks appointments and because Wyatt has already regained his birth weight we will not have to go back next week for the 2 week well child visit. The doctor thinks he will do just fine to wait for the 2 month appointment. We scheduled Wyatt's 2 month check up and Bryan's 12 year check up for the same day. So I can kill two birds with one stone and get the boys checked out and all the immunizations they need. Woohoo! Bryan is thrilled ... or not. LOL

After the Family Med appointment we headed over to meet with the Genetic Specialist. He came out to the waiting room and got us for our appointment. He looked Wyatt over and discussed with us how the Family Med appointment went. We agreed to let him take a skin sample in order to grow some tissue so that he can further check into what, if anything, Wyatt has on a DNA level. We are going to have Wyatt circumcised and he agreed to let us use the foreskin for testing instead of taking a sample from some where else that would require a stitch. We had always planned on circumcising Wyatt and this will make for one less procedure to be done on him. The geneticist said he will be waiting right there with a sample dish if need be to make sure that they don't just throw the skin sample away.

It will take roughly 5 weeks to get the results from that test back. In the mean time Wyatt is doing very well on breast milk so the doctor does not think it is necessary to put Wyatt on the special formula for babies who have metabolic disorders. Wyatt's glucose readings have been stable at home and he says we no longer need to take his blood sugar. That is a huge relief for me. Taking blood sugar readings and taking blood sugar readings from your own tiny baby are two completely different things. Even though Wyatt tolerated the testing well it still broke my heart to stick his poor little foot several times a day. And I hated the suspense and fear Ethan and I would feel every time we took a reading. If we have any reason to be concerned we will still have to take it. But at least it is not all day every day anymore.

I had such high hopes for breastfeeding this time around. I failed miserably at it with Bryan and ended up pumping breast milk and then formula feeding. Wyatt nursed wonderfully and I thought for sure it was going to be an easy go the second time around. But being in the hospital messed that up horribly. I did nurse Wyatt once after we returned home. It went well but I spent the next few hours terrified because I had no way of knowing who much milk went into him. And after spending days calculating and recording just how much milk went in and urine and poop came out of him I could not relax with out a number. Ya sure he nursed for 10 minutes. But how many ounces went in? I could NOT relax and enjoy nursing anymore. I am sad that it was ruined for me again. But I promised myself that if breast feeding did not work again I would not beat myself up this time around. I am pumping breast milk and we are all feeding it to him from a bottle. It gives us all a wonderful chance to bond more with Wyatt. The pump I had was only meant for the occasional pumping when I returned to work in August. So we purchased a new and very nice breast pump. I was amazed to go from spending an hour pumping to empty both breasts to just 10 minutes. TEN MINUTES and I am done pumping on both sides and have an ample supply of fresh breast milk to feed Wyatt. I have even been able to pump extra to start a freezer stash. No, I am not breast feeding anymore. But Wyatt is still getting breast milk. That is the most important thing to me. Look at how amazing the power of mother's milk was for Wyatt in the hospital. I truly give it up to mother nature for giving me the ability to provide something so healing to my son. While I still think formula is a perfectly good form of feeding a baby. It certainly never harmed Bryan. I will never doubt the power of breast milk again. I look forward to providing milk for Wyatt for the next year.

So Wyatt is doing well now. He is back to his healthy, happy, alert little self that we brought home from the hospital on Wednesday afternoon. I wish that we could erase the drama of the last week and just enjoy our newly expanded family. I am angry that we were put through that hell. But happy that we looked into something that could have been a problem for Wyatt. I guess I would rather all that hell be for nothing then not know and have something very bad happen to him. If nothing else the experience has brought Ethan and I closer, both of us closer to our children and brought us closer to God. Never once did we blame God or ask him why he was doing this to us. We trusted in him and prayed that everything would be ok. Thankfully our prayers were answered and Wyatt is doing well. Continued prayers that everything goes well, that Wyatt does not have any kind of metabolic disorder and that he will grow and thrive from here on out. Maybe now we can start resuming a normal life with our boys.


1 comment:

  1. Hello, I came across you blog tonight when I was looking for another VLCAD blog. Our son is 16 months old and has been diagnosed with VLCAD. We got the same phone call shortly after bringing Owen home. We've been on special formulas and he has restricted fat intake, but other than that he's just like any other 16 month old. I know how scary it all was at the beginning, so I just thought I would share our story. You can read more about our son at www.thesummerfords.blogspot.com Hope this helps!