Visiting great-grandparents

On Saturday Shawn, Oliver, my dad and myself went down to Walcott and Davenport so that Oliver could meet some family and see his great-grandparents again. It had been since he was in the NICU that my Grandma Warnecke was able to see him and November since my Grandpa and Grandma Doerscher saw Oliver since we weren't able to make it down for the holidays with me working. Oliver also was able to meet Uncle Lon and my cousins Brittney, Bridget and Brooke as well as seeing Aunt Marti and Aunt Karla again. We also spent some time with Aunt Debbie and Uncle Dennis at Grandpa and Grandma's house. Here's our Saturday in pictures.

1-20-11

Okay so I was after my sister to post a blog and then I realized that I hadn't posted one either in a long time. We've been busy at our house fighting off illness after illnesses starting with Oliver and a sinus infection and eye infection and ending with Shawn and I having the full-blown stomach flu. I can now say that we're all feeling a bit better but we're still dealing with Oliver throwing-up at least once if not more times a day. I've called the pediatrician about it and they're not concerned at this time because he is gaining weight still. This has been going on for about 3 weeks now and I can say that it is getting old and I wish I knew why he was vomitting.

The bubbles and music from my seahorse make me so sleepy that I can hardly keep my eyes open for mom to take the picture.

Oliver is around 12 pounds now which is still very small for a 5 month old. We've also had to start using formula this week since I do not produce enough milk now for him. It's been a struggle to get formula for him since it has to be low iron, but I think we're figuring it out now. Oliver didn't like the formula at first and now I think he likes it better than the breast milk. He still remains a happy boy but I think he's going through the developmental stage of not wanting to be alone. When others are in the room with him he is happy talking and playing but once you walk away from him he's crying.

He's not rolling over or sitting up or starting solid foods yet, but he has the best smile and he's come a long way. He's getting better at his tummy time with some help from the AEA teacher who comes by once a month to play with Oliver and tell me things to help him along developmentally. We now know that we have to sing when he is on his tummy so he doesn't cry and prop him up with a rolled up blanket. Once he is up on that rolled up blanket he holds his head up and looks around reaching for his toys in front of him. He also does not favor looking only to the right anymore and looks both directions. His hemaglobin also keeps coming up. Just yesterday it was 10.6! We only get it checked now every 2 weeks since it has been trending up and go to the hematologist every other month. We're so proud of our little boy!

My little sleeping boy is in his crib again after sleeping in his carseat for weeks due to his sinus congestion and drainage. My mom and I also hung the OLIVER above his bed that Chuck and Shirley gave us. He still sleeps with his arms above his head. We're headed down to the Quad Cities to see the family down there on Saturday so we're excited for everyone to meet/see Oliver again.

Oliver's first Christmas

Well I think that Shawn and I got the best present this year for Christmas. Oliver's hemaglobin check on 12-23-10 came back at 8.2 so it is continuing to go up! We are so elated that he hasn't had to have a blood transfusion since 11-8-10 and hope that he won't in the near future.

Christmas started for us on Sunday 12-19-10 with the Peterman's at Grandpa Chuck's and Grandma Shirley's house. Since I worked all of Christmas weekend from the 24th-26th we had to plan all of our Christmases around that. Oliver was a good boy with all the people there. His Great Uncle and Aunt from Oklahoma got to meet him and Oliver got in some good snuggle time with Great Aunt Lisa rocking him.

The next time we got together to celebrate was when Chuck and Shirley and Grandma Mary came over on Wednesday night to watch us open our presents from them.

Thursday night Shawn and I had Christmas at our house with Oliver opening up our gifts and then we headed across the street to see my sister and her family from Omaha. Oliver got some Caterpillar collector toys and a Cat onesie as well as some toys. Shawn also thought that Oliver needed a different diaper bag so of course he got Oliver a Cat bag.


New toys -He's licking them

Look at all the presents


Oliver and his cousin Annaliese

Oliver and Annaliese

Then Friday morning we went across the street again for brunch at Grandpa Dave's and Grandma Sandy's house. Oliver played with his cousins on the floor and Ian enjoyed being an elf and passing out the gifts. Oliver slept through most of that Christmas on Daddy's lap but woke up in time for a family picture.

Some books

Christmas Day I was sleeping since I had worked Christmas Eve night so Shawn took Oliver in to his parents and ate lunch in there with Grandma Mary.

It's been a busy Christmas but we enjoyed getting together with everyone.

12-11-10

Look at me, I'm so cute when I sleep

I like to sleep like this in my swing

Yesterday Shawn, Oliver and I went down to Iowa City to see the hematologist. Dr. El-Sheikh came up with the funding to send not only Oliver's blood but also Shawn and mine for genetic testing in Israel. They are sending it there because they are the only people testing for the CDAN1 gene that is found in all CDA type 1 cases. We should get the results of that in 3-4 weeks. Shawn and I also had blood drawn for another research study going on at the U of I to study diseases of the premature infant to see if there is a genetic link. This study though is not for the CDA but for the PPHN - persistant pulmonary hypertension of the newborn. Oliver had given enough blood for the day though so they just did a cheek swab for DNA for him. Oliver's 1st sample of blood clotted so they had to stick him again this time the only place they found a vein was in his head and they they didn't get enough blood that way either so they had to do a heel stick after that for his normal CBC tests. By the time they did the heel stick he was down about 18ml of blood so his hemaglobin was only 7.3. Last time it was checked it was 8.3. Dr. El-Sheikh thinks that Oliver's hemaglobin is going up because of spontaneous generation. He explained that this is what they were hoping for. See there are 3 ways to treat the CDA - with interferon (the medication), a bone marrow transplant, or spontaneous generation (his bone marrow kicks in and produces enough to sustain the body.) So, we're hoping that he won't need too many blood transfusions anymore. We will still have to deal with the iron overloading but we'll cross that bridge when we get there. His ferritin (iron level) also decreased from the last time and it is less than 1000 now! Probably due again to the amount of blood that was taken out of him but none-the-less as long as he can produce his own RBC that is a way they could get the iron out of him. There is also the chelation therapy (a medication he would get to rid him of some of the iron.)

We also met with a developmental nurse practitioner who follows-up with babies after being in the NICU. She says that at his adjusted age of 2.5 months (they go by when my due date was not when he was born) he is doing well. She did give us some things to work on. We've been noticing lately that he always looks either mid line or to the right and rarely to the left. She said that they see this in a lot of the kids in the NICU because most nurses are right handed and do everything with the babies from the right side and his crib in bay 4 when he was most alert was facing the doorway to the right. So, we now have to hold his head to the left to stretch out the muscles. We also have to do more tummy time because he will hold his head up but not for long periods of time as she would like while on his tummy. She said to try and work on these 2 things and when we see his pediatrician in a little over a week and he can determine if Oliver will need physical therapy.

I'm working on my tummy time. See mom, I can hold my head up

I can also hold my own bottle (well for a short time)

I don't like to suck my thumb or fingers but I like to lick everything including my hands.

11-30-10

I think we're getting our Christmas miracle. Oliver's hemaglobin has been increasing the last 2 weeks, not decreasing!!! At his appointment on 11-19-10 it was 7.6, the next Friday it was 7.7 and today only 4 days after getting it checked it is now 8.3. I don't have words for it, other than it must be a miracle! We don't go back to the hematologist until the 10th so it will be interesting to see what he says about the increase. In a few of the studies I have read on CDA, most of the kids are not blood transfusion dependent but yet they still have to deal with the iron overloading. They will check another iron level on the 10th as well. On the downside, I decided I better take Oliver in to the clinic today to get this congestion figured out. He's been congested the last 3 weeks and been sleeping in his car seat with 2 humidifiers going in his room and nothing has helped. He has a sinus infection and is now on amoxicillin so hopefully I won't have a stuffy baby anymore.



We decorated for Christmas on Saturday at out house and it definitely is more fun when you have kids. Oliver sat in his bouncer and talked to us as we decorated the tree. I bet next year will be a different story in decorating since he will be up and moving and actually able to touch the tree then.

11-22-10

Friday Oliver, my mom and I went to Iowa City again to see the hematologist. Oliver had his blood drawn and that didn't give us great news. His hemaglobin was 7.6 only 11 days after his last blood transfusion. So, that means that either he didn't get enough blood the last time or that his hemaglobin is decreasing faster than previous. The hematologist wants to start Oliver on interferon, a medication that will make the bone marrow produce red blood cell faster so the hope is that he wouldn't need blood transfusions. There are a few down sides to interferon though. It hasn't been used in babies younger than 14 months and Oliver is now only 3 months. It also has some serious side effects like either a high or low heart rate, low blood pressure, fever that could last a few days, vomitting and other flu like symptoms. Because of the risks, side effects, and Oliver's age we would also have to stay in the hospital for at least 24 hours so they can monitor him. They want to start him on the interferon when he is 4 to 4 1/2 months because he already has an extreme amount of iron in his blood that has caused his liver to be enlarged and getting blood transfusions just adds more iron that he doesn't need. In the research I have done, the interferon has also showed improvement in the iron levels in people with Oliver's condition so much so that with long term, low dose therapy, the affected people didn't need blood transfusions or chelation therapy (meds given to get rid of the iron in his blood). Chelation therapy is still an option for Oliver to get rid of the iron but he has to be 6 months for that to happen and that has side effects as well.

So, in the next month Shawn and I need to decide how to procede and what I will do about work and taking care of Oliver. He could be getting the interferon 2-3 time a week to begin with and if we have to stay in the hospital for 24 hours each time, we would need to do something else about work so we can be there for Oliver as he fights this rare disease. We hope to have more answers about interferon and chelation therapy after our next visit to the hematologist. He also did bring up bone marrow transplant or stem cell transplant but that is not the best approach for Oliver since the best match for him would be from a sibling.

This past weekend was my first weekend to work so Shawn and Oliver spent quality time together, with a little help each day from both sets of Oliver's grandparents. I even had supper made for me Saturday night and many chores off the honey-do list done. So I must say that I was very impressed with Shawn. Here's some more pictures of our little cutie.

Big smile wearing one of his Oliver tractor shirts.

Go Hawkeyes!!!

11-14-10

Shawn's cousins had a shower for Oliver, Shawn and I on the Kainz side and we got a lot of great things. Oliver got his first Oliver tractor from his Great Uncle Don which Shawn was more excited about than Oliver at this time but don't worry Shawn, I'm sure Oliver will share once he learns what that means.

Not much else going on this weekend. Oliver had a better couple of days of daycare toward the end of last week. Here's some more pictures of my sweet boy. I finally caught him smiling on camera. Too bad it's not one of his big smiles.