10-30-10

My coworkers at the hospital threw Oliver and I a baby shower this past Wednesday. We received some great things and had an awesome cake. The duck and everything on the top is cake! I can now do things around the house with my hands free with the Baby Bjorn carrier we received, although, I have gotten pretty good and doing things one handed. Thanks to all who attended and for the wonderful gifts. Only 10 more days and I'll be back at work. I had a bit of a panic attack on Tuesday after getting off the phone with the daycare. I think it all just set in for me then that I had to go back soon and that someone else would be taking care of my son. But, in a way and I will happy to go back to work and see everyone and use my skills.

Today Oliver got to meet his future girlfriend (he just doesn't know it yet.) Our friend Mallory brought her daughter Reese, who is almost 5 months, over to meet him. I love how he is resting his head on her shoulder. Gretchen, her boyfriend Mark, and Mallory's sister Missy also came to visit us. Shawn has always thought of Mallory as his little sister so here's a picture of Oliver with his Auntie Mal.

Oliver knows what team to cheer for. Go Hawks! He's wearing one of his Halloween outfits too. I love the little pumpkin's on his feet.

10-25-10

We went to Iowa City again today to see the hematologist. He had more blood work done and special test to see which type of the congenital dyserythropoietic anemia (CDA) he has. The doctor showed us slides of his bone marrow cells and from that he is pretty sure that he has CDA type 1. They also did a ham test (take some blood and mix it with a special acid to see how it breaks down). His hemaglobin was 8.8 today so he didn't need a blood transfusion. They also tested his ferritin level which is what checks how much iron is in his blood and it came back high at 1231 and normal is 500. The doctor isn't going to do anything about the iron yet until it reaches 3000 and then he would need meds to help with it. With this CDA type 1, it can be treated also with a med called interferon but he has to wait until he is 14 months old to have that. Until then, we will continue the blood transfusions as needed if his hemaglobin now gets below 6 or he is symptomatic.

Since this disease is very rare with only about 300 cases worldwide, our doctor has contacted many other physicians in other countries where this is more prevalent such as Israel. Israel alone has around 70 cases of it and the US has around 30. He is sending some of Oliver's blood work over to Israel to have it tested for a specific type of gene called CDAN1. This test costs $1000 and insurance does not cover it but since his case is so unique, and the doctor wants to use Oliver's condition for research, and they are covering the cost of the test. Our doctor is also writing an article for the New England Journal of Medicine (a prominent magazine in the medical world) about Oliver's case.

Otherwise Oliver is doing great. He's now 8 lbs 11 oz and is still 21 inches long. He's letting Shawn and I sleep a bit more at night averaging around 4-5 hours initially then usually every 3 hours after that. It's sad to think that I'll be going back to work in 2 weeks and Oliver will be going to daycare. Today now marks 33 days home after being in the NICU 33 days so he's only been home half of his life.

Oliver is cooing more than ever and "talking."

He's sporting the Harley Davidson outfit his daddy bought him.

2 months old

Oliver is 2 months old today and I've been told that my blog posts lack photos but that's only because my camera broke and I had to get a new one. So, here are a collage of photos from the last few days.

On Friday we went to his pediatrician to have his 2 month check-up. He's 7lbs 14.5 oz and 21 1/4 inches long. He's not on the growth charts yet but he's making good progress. He also received some of his shots. Here's a picture with all of his band aids on. He did really well getting them, only cried for a brief time until I was able to pick him up. He will have to receive his vaccines earlier than other kids because of the fact that he may lose his spleen and will need the vaccines before that happens to help with his immunity.

Oliver's getting ready for his bath.

Saturday we loaded up in the car for a long ride to Omaha to see his cousins and be there for Annaliese's baptism. Lets just say he did better coming back from Omaha than going there. He was awake for over 4 hours on the way out and we had to stop 4 times and only 45 minutes total on the way back stopping once.

Oliver being held by his cousins Ian and Annaliese.

Just hanging out on Ian's quilt made by Colleen. He's now starting to move his head to noises and tract with his eyes.

He's "SO BIG".

Family picture

Great Grandma Mary came over to hold Oliver for the first time on Monday.

Monday we also went to the lab to have blood work done again and his hemaglobin was 9.3 so no blood transfusion was needed. Oliver is changing so much, he's cooing and holding his head up for a short time. He smiles a lot and is eating around 3 ounces at a time now. We've stopped the breast milk fortified with neosure because the neosure has too much iron in it and that is exactly what we don't want so he's getting plain breast milk. Today, at 2 months, I finally put him in 0-3 months clothes because he was getting so long he couldn't kick and stretch his legs out in the newborn clothes anymore.

We have a diagnosis

On Monday Shawn and I took Oliver down for what we thought was just a clinic visit to have his bone marrow biopsy and aspirate. When they did labs his hemaglobin came back at 5.9 so they decided to give him a blood transfusion first. They didn't want to cause more stress and harm to his body and especially his heart by doing the biopsy first so we waited and waited for his blood transfusion still with the hopes of them doing the biopsy later in the day. He was supposed to have the biopsy done at 11:00 so he couldn't eat anything after 6am. Finally after 1:00pm, and walking laps around the clinic to calm him due to being starving, they let us feed him because they weren't going to do the biopsy since the transfusion would take 3 hours and they hadn't even started it yet. At that point they gave us the option of being admitted or going home and coming back the next day for the biopsy. We opted to be admitted so we wouldn't have to go though the whole process and waiting game again and knew if we were admitted it would be a scheduled time and we wouldn't have to wait. Shawn had to go home because he doesn't have any vacation time the way it is anymore and can't be taking more days off so I stayed with Oliver and my dad would come pick us up Tuesday.

So Oliver received 35ml of blood of Monday afternoon/evening on the pediatric unit at UIHC. After about 31ml had gone in he started developing red splotches and a rash covering his face, neck and upper torso. I alerted the nurse because this looked like a transfusion reaction to me. And, it turns out it was. Crazy that in all my experience giving blood in my career, I've never had anyone have a reaction and now it had to happen to my son. They gave him benadryl and tylenol before the transfusion so they couldn't give him more yet and he was very irritable and we think probably itchy but they wouldn't give him anything. So, once again we paced around the halls on the peds floor since that seemed the only way he was content. Let's just say it was a very long night and both he and I didn't not get a lot of sleep.

They did do the bone marrow biopsy and aspirate at about 8:45 (only 15 minutes late- much better than the 2-3 hour waiting game we played the day before.) After giving him some meds to make him sleepy, they did the procedure and it only lasted 20 minutes. The doctor said he did great and they got a good sample. They also did another CBC and his hemaglobin had come up to 10.1 after the infusion. Many hours later the hematologists came to me with a preliminary diagnosis. Oliver has congenital dyserythropoietic anemia -CDA. So to break it down for you, his bone marrow is producing red blood cells but they are deformed. The hemaglobin is still doing its job and carrying oxygen around on the cells to the body but since they are deformed, they die quickly before more can mature enough to function. This is a very rare disease with only around 30 people in the US having it now and Oliver is only the 3 case the U of I has seen since it has been around. Since it is so rare, there aren't a lot of studies or research that has been done on it so what they know for sure is that there are 3 types of this anemia and our Dr. thinks he has type 2 but won't know for sure until more testing is done. They are still testing the bone marrow now for genetic and serology type things and I should know the final answer later this week.

So, how do we treat it? For now he will have a CBC (it will tell us his hemaglobin) weekly and if it gets below 8 he will need a blood transfusion. We don't have to go to Iowa City for this, he can get the blood work done in Elkader and the transfusions in Dubuque. He may need a blood transfusion at least once a month but that comes with consequences as well. See when you give blood you also give a lot of iron too mixed in with the blood. Since there isn't a way to filter it out when it is donated he will receive too much and not be able to get rid of it. The iron builds up in people's spleens so eventually he will have to have that removed when it gets enlarged. They are hoping that he will be able to keep it until at least he is age 2 because it is important for infants and toddlers to have it to help with your immune system. I did also ask about a bone marrow transplant and they said that it is an option that may come down the road but not now. So we've started a new initiative as a family to donate blood. We ask that if your are able and willing and you see that a donation site is coming to donate and think that is some sort of way you could indirectly be helping Oliver. He may need a lot of transfusions in his life and we're thankful for those who have donated already to help him.

We go back to Iowa City in 2 weeks to follow up again and do more testing to see which type of CDA he has and he may get a transfusion again. Since he did have a transfusion reaction, the donor blood will need to be tested to a greater extent so it doesn't happen again. On the upside, he is growing and is now 7 lbs 12 oz and 20 inches long. We go see his pediatrician in Dubuque on Friday for his 2 month check-up and get his shots. The hematologists say to treat him like a normal baby but just been observant for signs that his hemaglobin is low. So that is what we'll do, we'll spoil him like crazy and get through this the best we can. At least we know what we're dealing with now. Since the blood transfusion on Monday we can even see a change in him. He now "plays" by laying on the floor or in his crib and kicks and "talks"/coos. He even slept 6 hours straight last night!

10-8-10

Well we got Oliver's hemaglobin checked yesterday and it came back lower at 6.9. So, after talking with one of the residents down in Iowa City we came to the conclusion that we should move up the date of his bone marrow biopsy and aspirate to this coming Monday the 11th instead of waiting until the 18th. It is a mix of emotions Shawn and I are feeling. We want him to have the procedure so we figure out what is going on and how to treat it, but we're scared for him and scared about the outcome as well. The doctors haven't really told us yet what it could be and what the treatment plan is so hopefully we'll come away with answers on Monday to all of our questions.

You can really tell now that his hemaglobin is low because he is exhibiting the signs of it being low that they told me to watch for. It is crazy how much adults and babies are different in they way they show the signs of anemia. Adults are usually tired and weak and Oliver is anything but that. Today alone he was awake for 6.25 hours straight and was very fussy unless he was held and rocked. Good thing it is nice out and we can go on walks to help calm him down although it is very buggy. At night he isn't sleeping the 3-5 hours as before we're lucky if he goes 2 hours straight before waking up but at least he goes right back to sleep once you satisfy his needs. He's still eating like crazy and gaining weight and peeing and pooping fine. His color is a little more pale but hopefully this will all resolve once he has more hemaglobin either by transfusion of blood or by others means.

Keep praying for little Oliver so that he can fight this as well and prevail. We're taking it day by day and hoping the Monday will give us come clarity so we know what we're up against and how to fight it. Thank you to everyone who keeps praying for us and keeping us in your thoughts, it means the world to us and we know the power of prayer works. It helped Oliver though the pulmonary hypertension and getting through the morhpine withdrawal and off the oxygen so that he could come home and we know it will help with this too.

10-2-10

Wow, what a turn of events to say the least. I thought things were going well at home and we were adjusting well until Thursdays events through a wrench in it. I took Oliver in to get a complete blood count (CBC) workup done in Elkader to check his hemaglobin and it came back critically low at 7.5 via heel stick. They then called it to the pediatrician in Dubuque who wanted him stuck again and this time venously through his arm and it was 7.3. Our pediatrician then contacted me and said we should talk to Iowa City again about it since they are the ones who started it and have all of his transfusion records. So long story short we ended up in Iowa City yesterday to meet with a pediatric hematologist (doctor specializing in blood). He did more blood work down there and stated that his bone marrow just hasn't kicked in producing red blood cells. He won't know why his bone marrow hasn't kicked in until they do a bone marrow aspirate and biopsy (take a chip of his hip bone out to test it and use a needle to draw out some marrow from inside the bone). They can't do that procedure though for another 2 weeks since his blood is not fully his own yet from all the transfusions he had early in his life. So in the meantime, I am supposed to take him in at least once a week for a CBC in Elkader. And, if at anytime I am concerned about Oliver I can take him in to be tested and then the doctor in Iowa City will let me know what I have to do or if we have to get in earlier than 2 weeks. I just pray that it comes back higher when I take him in and that his bone marrow kicks in and does the job it is supposed to do so he doesn't have to have the bone marrow procedure. I don't know yet if we'd have to stay for that or it's done just as an outpatient but I know that he will be sedated for it again with our nemesis - MORPHINE! At least they will give him versed too and there shouldn't be any taper off of it or withdrawal from the morphine this time.

So I guess we'll just hurry up and wait for answers. Yesterday wasn't quite the way I'd have liked to spend my birthday but at least we could come home last night.