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.

Back to work and off to daycare

Yesterday we went and got blood work done and his hemaglobin was 6.9. Oliver had been getting more and more symptomatic since about Tuesday and I took him in on Thursday to see one of our local doctors and have labs drawn. After talking with our hematologist we decided to wait a bit longer. So when we got it tested Monday (yesterday) I decided that enough was enough and that we should just get it done because we can't send him to daycare so irritable. Oliver was only sleeping maybe an hour in a 12 hour period during the day and was so fussy during that time. He also would cough and scream when he was drinking from his bottle as if it was too much work for him to both suck and breathe. So we went down to Dubuque for a blood transfusion. My father-in-law Chuck went with Oliver and we were there for over 9 hours when it only should have taken around 4-5 hours to complete everything!!! We waited and waited it seemed for everything. We got there at 12:30 and they didn't start the blood until 5:45 so we didn't leave Dubuque until 9:45 making for a very long day and a very short night before I started back to work today and Oliver went to daycare.

So today was my first day back at work and Oliver's first day at daycare. Let's just say that I am so glad that Shawn takes him because I don't think I would have been able to leave him. I only was able to leave the house this morning because I was running behind schedule and had to get my butt moving. Oliver only was there for a shortened day because Shawn had a mandatory meeting to go to and I had to work of course. So, my mom was nice enough to pick him up and watch him until I got home. Oliver didn't have a good first day at daycare. They said he cried a lot and didn't sleep but maybe only 5 minutes. He also had trouble eating. This makes me even more apprehensive about daycare. I'm sure every mom goes through this and it will just take some adjustment on Oliver and my part. Today at work, I did for just a second forget about Oliver as one of my coworkers told me I would. But most of the day I thought about him and how he was doing. Oliver goes again tomorrow and hopefully he will get used to the staff and other kids and do better over time. I know that daycare providers won't spoil him like I do, and spend most his awake time playing with him and holding him, but sometimes I think that they are too busy up there to care for so many little babies. He is in an infant room with kids ages 6 weeks to 18 months and Oliver is the smallest there but not the youngest. I am hopeful that we will work all of this out soon and figure out if this daycare is right for us and for my schedule.

A day of firsts

Happy belated Halloween from my little pumpkin (the cutest pumpkin in the patch.) Oliver celebrated his first Halloween by sleeping through most of the trick or treating. It was also his first time in our church on Sunday besides church in Omaha for Annaliese's baptism. Unlike church in Omaha where he slept through most of it, he did not sleep at all during church this week. Oliver likes to be on the move. Whether that be in the stroller, people walking him around, rocking in the chair, riding in a shopping cart or in the car or even just laying on the floor for a short time to kick; so sitting in church he didn't like. So, Oliver and I walked around the halls of the church listening to the sermon.

Oliver has also started laughing. He only does it when he is really tired and just about ready to fall asleep but it is so cute. He'll give you a big smile, then laugh, and then close his eyes and fall asleep. I'll miss all of this when I go back to work in a week from today so hopefully he only has milestones on my days off... yeah right. I'll be mostly working nights so that I can stay on a regular schedule and Shawn will take Oliver to daycare so I can sleep during the day. Poor Shawn will have to get up with him during the night though, and I will have restfull sleep during the day...hopefully. But we're thinking that Oliver will be sleeping through the night here shortly. He's averaging a span of 5-6 hours initially, we feed him and he goes back to sleep, and then always awakes around 5:30-6:00 am. We're sort of getting a routine down with a bath at night around the same time then feeding him, story time, and rocking to sleep.

Monday I took him into the lab again for his blood draw and it was 7.7 so no transfusion needed this time. He's not looking pale and is acting very normal for him, not irritable or fussy.

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.

9-27-10

It was picture day for Oliver today and we got some great ones. Thea, our friend and neighbor took some awesome shots of the little man and Oliver actually cooperated for around 2 hours until enough was enough he thought. I can't wait to see how they turned out.

We had a good weekend as a family. Thea and Haley came to visit on Sunday as well as Ryan and Tonia. Both sets of grandparents throughout the weekend came over too. Oliver's sleep schedule is variable to say the least. The night we got 5 straight hours is a distant memory and now we get 2-3 hour stretches at night. During the day we're lucky if he sleeps 2 hours straight. I have to keep thinking that he is not a newborn baby and sleeps constantly but he's almost 6 weeks old and wanting to play. Good thing he's being a good boy today and let me take a nap too when he slept.

Let me tell you, Oliver eats and eats and eats now. Just this morning from 7:45-8:30 he had 5 ounces total because once he finishes a bottle he keeps crying and rooting that he wants more. I'll be anxious to see how much he weighs when I take him in for his blood draw the end of the week.

9-24-10

Okay you know you're getting less sleep than you're used to when I had to go look at a calendar to see not only the date but the day of the week to write it on here for the title. I think the pregnancy brain I had early on in pregnancy is back because I can't remember anything. Okay enough about me now on to Oliver.

Oliver had his first check up yesterday in Dubuque with the pediatrician that worked on him when he was first born. Oliver grew 6 oz since he was weighed last on Monday and is now 6lbs 8oz. Now I definitely know he is going through a growth spurt and all this fortified breast milk we're giving him is going somewhere. Oliver has another blocked tear duct now on the right side, so we're doing eye drops again. He also had his blood drawn again to check a hemaglobin (red blood cell count) since it was low on Monday at 8.6. Now it is 9.1 so it is going up. We will have it checked again next week to make sure it is going up. We've found a good way for him to take his multivitamin with extra iron in it as well. Put the med in a like 40ml of his fortified breast milk when he is screaming his head off and he doesn't even know that it is in there because he's just so hungry. We then follow it up with another bottle of just plain breast milk. It seems to be working now and he doesn't spit it out and stain everything because it is black.

I don't think Shawn has ever had as clean of hands as he has lately from doing the dishes all the time from the bottles and bottles we go through and after all the diaper changes. I guess I knew babies went through a lot of diapers but we've already gone through 2 packages of them since we've been home! He's a pooping machine. Sometimes I wonder why they tell you you have to change his diaper before you feed him since he is screaming his head off in hunger and then we have to change it at least once but usually 2 times after he eats because he oozes poop for almost and hour after he eats it seems. We asked the doctor about the loose frequent stools because in Iowa City they attributed it to the morphine withdrawal but he's not on that anymore so who knows. At least his butt looks okay so we'll keep doing what we're doing.

Oliver is sleeping pretty well at night and last night we actually slept for 5 hours straight. It's the getting him to sleep part that is frustrating at times because he is so fussy when he is tired but can't fall asleep. He usually doesn't like to go to bed until around midnight when we're just exhausted from the day and want to sleep but he wants to be awake. Today is my first day alone with him being home because Shawn had to go back to work. So far, so good. We both woke up (he woke me up) at 7:45 and stayed awake until 10am when we finally both crashed on the couch together. And he's still asleep in his crib and it's after noon!

9-22-10

Well we're home!! Oliver did good with the car ride home, we know that car rides put him to sleep now. We did have to stop in Manchester to feed him only because it took the nurse awhile to discharge us after he had eaten there. Once we got home we had to try out the bouncer and that was good for a bit. I think he is going through a growth spurt though because all he wanted to do since we got home was eat, eat, eat. After getting batteries, we then tried out the swing later that night. We toured the house and tried out his crib.

When mom and dad finally settled in and was ready for bed, Oliver was wide awake - until about midnight. He ate twice from 10pm to midnight and we changed numerous diapers. Then we figured out that he probably had an upset stomach keeping him awake when he puked up everything he had just ate. Guess he maybe overate. That was # 1 outfit change for both mom and Oliver. We think he was scared and didn't know where he was in that big bed. I know they say not to put anything but the baby in the bed due to SIDS, but after 2.5 hours of whimpering and crying we decided to swaddle him up. He had been swaddled at the hospital most of his life so he probably didn't like all the room to move around and wanted to be snuggled in. We just made sure the blanket wasn't around his face at all and was tightly wrapped. Once he was swaddled he slept until 4:40am! I couldn't believe it, he slept so good. Once again at 4:40 though after changing his diaper and feeding him, we had to have outfit change #2 for mom and Oliver when he had a very large explosive bowel movement that went through the diaper. He didn't want to sleep after all that commotion and stayed awake until 7am today. But before that he had outfit change #3 for Oliver when he peed through his diaper, clothes, and crib sheet. We now know that at night he has to wear size 1 diapers but during the day we can wear newborn diapers. Shawn and I went back to bed at 7am. I think Shawn is happy he took off until Friday from work. We definitely think Oliver has his days and nights mixed up because he sleeps so well during the day, falling asleep right after his feedings but that is not the case at night. This morning after feeding him at 10am he went right to sleep despite me trying my best to keep him awake. Now he'll actually sleep without being swaddled today.

These piggy sheets are fitting for Oliver after yesterday and his eating so much. We had to put these on in the middle of the night after the pee incident. Good thing Grandma Shirley made lots of sheets.

9-20-10

In less than 24 hours we will be on our way home... I hope. Today is Oliver's first day without morphine. It has been 26 hours without it now and so far so good. He also remains off the oxygen and does well off of it. We're getting ready to go home. The dietitian came in today to talk to me about his calorie needs since he still is small. He will need to have special formula for newborns mixed in with my breastmilk to give him extra calories and protein. He needs to have this in at least 2 bottles a day. Breastfeeding is going better for us now as well. I think the bottle actually helped him learn how to suck and swallow better so he breastfeeds better. He will also need to take a multivitamin with a lot of iron in it daily due to his hemaglobin problems. Speak of hemaglobin (red blood cells)... last monday it was 11.3 and today it was 8.6, which is quite low. This concerns me a bit because that is a big drop in a weeks time. The doctors aren't concerned about it now since he is not symptomatic and says that it can be follow up upon with Dr. Callahan in Dubuque on our follow up appointment Thursday. I just don't want it to get so low again like it was when he was born. I was hoping they would check it again before we leave just to make sure that it will be okay to wait 3 days until Dr. Callahan checks it. I just want to know why his bone marrow is so slow at producing blood but they still have to reason for me as to why he is doing this, all the usual culprits have come back normal.


Since not much to post here are some more pictures of him sitting in his car seat in the crib for his car seat evaluation.

9-19-10

Oliver is 1 month old today and we got the best birthday present... We're going home on Tuesday!!!!! He's doing so well eating and growing. His measurements now 1 month after birth are 6lbs 1.5oz, 19 and 3/4 inches long and a head circumference of 33.5cm. Today Oliver's morphine whet to every 24 hours and so far at 3:30 in the afternoon no withdrawal symptoms. He's also off the oxygen. That is right, I can finally see my baby's face and kiss his little cheeks. They will continue to monitor him off the oxygen until we leave to see if it ever drops but so far with being off of it for 6 hours now the lowest I have seen it was 91%, which is great.

Shawn and his parents now left for the weekend but Shawn is coming back tomorrow to stay the night so we can take him home Tuesday morning. I do have a favor to ask of everyone. I know you'll all be excited to see us at home but I ask that you give us at least a day and let us settle in at home before visiting or calling. We have to learn to be his primary caregivers 24 hours a day now for the rest of his life (well maybe that is an exageration - maybe for the rest of his childhood.) Tonight will be my last night in the camper and let me say I am very greatful that my in-laws loaned it to me for a month and I appreciate it deeply but I do not ever want to go camping whether in a camper or tent for a very, very, very, long time.

I'm so proud of all the progress and fighting my little man has made over the last month. It's hard to believe what he's accomplished so far so early in his life. Tomorrow a few more things to do such as the circumcision and his car seat exam. For the car seat exam they put him in his car seat and monitor him for the length of time it would take us to get home to make sure he can tolerate sitting in a car seat. So he just has to hang out in his car seat for around 2 hours tomorrow instead of a crib. Shawn learned infant CPR last night and they even sent us home with a mini baby practice doll to keep so that others can learn CPR too and know how to do compressions and give breaths watching the chest rise. He passed his hearing test yesterday.

Here are some 1 month old pictures of Oliver with nothing on his face! I just caught him waking up after his nap. Thea - I'm no professional so we'll have you do the official pictures.

9-18-10

Guess what... the NG (the feeding tube in his nose) came out today!!!! And it was on purpose too that it came out for once. My little man is a little piggy. Last night at midnight he wasn't satisified with his 58ml of milk so the nurse got him more. The nurse practioner then decided that he could try eating on demand last night as long as he ate 140ml every 8 hours. He ate that and more. Today he also did great and ate more than the 140ml each 8 hours. Oliver now wakes up and fusses about every 2.5-4 hours and wants to eat and eats around 50-70ml each time. He's doing really great. He now broke the 6 pound mark and weighs 6 lbs 1.5 oz. Oliver is so impatient to start eating that he cannot wait when breastfeeding and gets upset waiting for my milk to "let down." So, we've had to bottle feed most of today which doesn't bother me a whole lot because he is still getting my milk and all the good benefits of breastmilk.

The preliminary result of the MRI showed a normal brain/head scan. We should know the final report tomorrow. Their explaination for the enlarged spleen and liver was from the suspected infection he had at birth causing his bone marrow to stop producing blood products. They also decreased the morphine to every 12 hours today. They plan on doing the room air trial off the oxygen tomorrow so we should know if he will need oxygen when he goes home if he doesn't tolerate the room air well. With his eating taking off we're hoping that maybe we won't have to wait until Friday for discharge.

Shawn and I gave Oliver a bath again today and Shawn got to give him a bottle and change his diaper many times. My parents came to visit and got to change his diaper, and help feed him as well. My Aunt Karla and cousins Kris and Kari also stopped by on their way back from Des Moines. We'll keep everyone posted on discharge as we know more.

9-17-10

We now have a for sure discharge date of next Friday Sept 24th whether it be with the NG feeding tube or without. It could be earlier if he starts eating more and is able to finish a bottle or breastfeeding without tiring. Right now he is so tired sometimes that he won't wake up for his feedings. I have asked his nurse practioner and Dr why they won't let him eat on demand when he is awake and they said they can't do that until he's eating his complete feeding with 80% of his feedings taken orally. We do know that it will not be until after Monday at the earliest since that is when they scheduled his hearing test and circumcision. It's exciting to know that by this time next week we could be getting ready to go home or at home. But it is scarry to think about going back to work soon. I'm definitely considering taking the full 12 weeks off of work now to get adjusted to having him at home. Especially if he has to go home with the NG for feedings and is on oxygen.

Other changes the team made today was to decrease the frequency of morphine now to every 8 hours in the hopes he may be off it before we go home. The ECHO yesterday showed normal pulmonary pressures which means the pulmonary hypertension is gone!!!! So they are going to do a room air trial off the oxygen on Sunday to see how he tolerates it and if his saturations drop that would indicate going home with the oxygen for at least a month. They also are going to do an MRI of his head today just to see if that will show anything of why his organs are so big but he is so small. I guess his liver and spleen are now enlarged as well. Oliver's weight today is 5 lbs 15 oz so he is gaining weight. The bad news about the MRI is that they have to put an IV back in him to give him contrast.

Shawn is coming back tonight for the weekend. Hopefully this will be the last time he has to come down before taking Oliver home!!! We both can't wait to have our family all together and so that Shawn can also get used to caring for him. The nurses have recommended that I do not stay at the hospital at night because you get less sleep here than we would when we go home with him and they say it would deplete my milk supply by being tired. I'm okay with that, the couch is very hard. I'm usually at the hospital for around 12 hours a day taking care of Oliver's needs and getting in my snuggle time. He's really starting to develop a personality and smiles frequently (and I don't think it's just gas). Guess I better quit writing, Oliver is waking up now.

9-16-10

I can't believe that it has been 4 weeks today. 4 weeks ago I went in for a normal 36 week OB appointment and soon after had a wonderful, beautiful son. It has also been 4 weeks since I have seen my house and I'm getting very homesick. I know we have to stay so that Oliver can learn to eat and grow but I can't help but want to bring him home. It seems as though he is over the illness and is in recovery mode and learning normal newborn things now.

Oliver continues to work on feedings either breast or bottle fed. Last night he finished 2 bottles completly and only needed a bolus once. Today though he has not been interested in bottles when I have been giving them to him and he needs to have the rest of the milk given through the NG tube. He did breastfeed well at noon today and even had a pattern to his suck/swallow/breathe.

They decreased the morphine frequency today to 0.1mg every 6 hours now. They're hoping that he will be off of it by the time we go home. They also did another ECHO of his heart again to determine if the pulmonary hypertension is still there and if it is what the pressures are to determine if he will go home on oxygen or not. I should know the result of this tomorrow morning after rounds. I pray that it is gone or reduced since the ECHO last week. The good news is that once it is gone you can never develop it again. All of the nurses keep telling me how lucky we are and that he was one sick boy. I think that I was unaware at the time how serious he was when he first arrived here until much later on when they finally explained things to me. He has been through a lot and I am so very proud of him for the progress he has made. We will continue to wait this out with him and let him tell us when he is ready to go home.


Yesterday my parents came to visit and go to hold Oliver for the first time. It made their day they said although he was asleep for most of their holding him.

9-15-10

Lets just say that Oliver had a rough Monday night into Tuesday morning due to withdrawal from the morphine so that is why I didn't post anything yesterday. He was very irritable and unsettled unless I was holding him tight so that he couldn't move a muscle. I ended up holding him from 9pm until 1:30 in the morning Tuesday morning. The only way he would sleep for almost 24 hours was to give him tylenol but then it only lasted for 1-1.5 hours or so and he was awake. I did sleep at the hospital Monday night but I did not last night due to me only getting 2.5 hours of sleep Monday night. I know I have to get used to less sleep when we go home, but it is so hard to see your baby go into withdrawal especially when you think things are getting better with them and then they decrease the dose of morphine and start the whole spiral again.

Monday they decreased his oxygen to 3/4 liter at 30% still blended air and oxygen and decreased the morphine to 0.15mg every 4 hours. Tuesday they decreased the oxygen to 1/2 liter and they did not change the morphine dose. Today the're decreasing the morphine again to 0.1mg. It's sort of bitter sweet because this is the dose I can take him home on but I don't want to see him go through withdrawal either.

We tried a bottle with breast milk in it yesterday since we're questioning if he is getting enough to eat when he breastfeeds and that could be the crankiness later. They're thinking he works too hard to suck, swallow and breathe that it tires him out and then he's alseep for around 20-30 minutes and wide awake again after crying. They say that it takes less energy to do a bottle and he did great. The nurses say that nipple confusion is an old wives tale and that in the 5 years she has been here she has had only 1 baby with it. Oliver does not have nipple confusion and today he had a bottle at 6am and at 9am I breastfed him. He does great with a bottle but that tires him out as well and he only gets in 30-40ml or about an ounce and a third in and then falls alseep and has to get the rest down his NG tube. So, we're continuing to work on eating because he has to be awake to take enough in to continue to gain weight. He's just gaining grams a day now and still weighs 5 lbs 12 oz. I can't wait for the time that they start on demand feedings instead of every 3 hours because that may help with some fussiness as well and help gain weight. We're looking at early next week now for discharge since we still have the normal newborn things to do.

9-13-10

I think Oliver had a bit of an issue with adjusting to Bay 4 yesterday and he was very irritable every time I would put him down. That was okay with me, I could hold him and catch up on all that time I missed holding him but I was starving at it was 8:30 at night. I finally got him asleep and I didn't think he'd wake up for the 9pm feeding so I went back to the camper last night to get things ready for me to start rooming in with him. I hope that with Oliver waking up/the nurse waking him every 3 hours and this hard couch I can get some rest here.

Today the doctor and nurse practioner decreased his oral morphine to 0.15mg every 4 hours and turned his oxygen down to 3/4 liter but they did have to turn the concentration up in the night to 25-30% due to some lower oxygen saturations below 90%. Today his sats have been in the high 90%'s on the 3/4 liter still at 30%.

The nurse practioner sat down with me and told me that we were talking days for discharge not weeks. She was hopeful that maybe by the weekend or early next week we could be going home. Once the morphine dose is at 0.1mg they would just be changing the frequency of how often it is given and that I could manage that at home. He will have to go home on some oxygen for a while so the only thing left for him is to eat. The nurse practioner said not to rush it and breastfeed him every time but to increase how often I do it by 1-2 times every day. So today I should feed him 4-5 times but let him rest a few as well and get the bolus as to not tire him out. He gained 90 grams since yesterday and now weighs 5 pounds 12 ounces so he is gaining weight. He is just small for his age because a 40 week baby, which is what he would have been if he was not early, should not weigh that little. So, they want to make certain before we leave that he can either breastfeed or bottle feed exclusively and that he can gain weight doing it and not lose it with the extra energy needed to suck.

9-12-10

We moved to Bay 4 today!!! I'm so excited because this room feels more homey. It has a couch that pulls out so you can sleep over, a TV, a bathroom with a shower, a recliner, wood cabinetry and a door that you can actually close so it is not so noisy! The whole idea now is that they want me to room in a much as possible so that way he can depend on me as his source of food and not on the bolus feedings through his NG. His breastfeeding is getting much better and he hasn't needed a bolus any time that I have nursed him since yesterday before noon. They also increased his bolus feedings to 55ml every 3 hours when he is not being breastfed since he didn't gain any weight over night.

Today they also put him on a regular nasal cannula and not a high flow as he was on so that means that the oxygen has less pressure going through his nose. The oxygen liter is still at 1 liter. No change with his morphine today.

The nurse I had today in Bay 2 told me that when he is breastfeeding 80% of the time then he can be on an on demand schedule with feeds and have the NG pulled instead of getting bolus fed every 3 hours. That means that I need to be feeding him at least 6-7 times out of the 8 times he eats a day. Wow, time for me to really be a mom and be his caregiver. I also think that my child poops more than any other baby. I'm being serious too - you change one diaper then he soils another right after that. He had 14 poops yesterday!! The nurse practioner told me that the loose, frequent stools can be attributed to the morphine withdrawal though. Another plus to getting off the morphine. The doctor we had this morning told us that he will probably have to go home on oxygen for a few weeks to months because it may take that long for his pulmonary hypertension to get better and the extra oxygen would be benefical while he's still fighting the disease. He can also go home on the oral morphine, so now we're just waiting for him to eat and gain weight. The doctor gave us less than 2 weeks to be here, I'm hoping for around a week but we're not rushing anything, I'm just ready to be home and get settled in with Oliver. And since I have the cutest baby in the world, here's a picture of my sleeping angel after the big trip to Bay 4.