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.

9-11-10

Oliver's due date is overshadowed by the big Iowa vs Iowa State game today. Oliver had to dress for the event today to show which team he is for. Today was a big day for Shawn who got to help me give Oliver a bath today. He also changed another diaper although he said he wants to get gloves to wear when we go home.

Last night I thought that Oliver was getting too much morphine and that that was the reason he wasn't interested in eating because he was so groggy. They ended up holding the 6pm dose of morphine last night and then at midnight changed the dose to 0.2mg every 4 hours still. Today has been a lot better with his sleep/wake cycles and breastfeeding. Today at 9am he only needed half a feeding down his tube and at noon he didn't need any extra down the tube because he did so well.

The result from the ECHO yesterday still does show the PFO hole in his heart but they said it will either close on its own or you can live with it as long as you don't have other cardiac issues. The pulmonary hypertension is still there but much decreased. The pressure when he came was 65% and it is now down to 30% which is great. They said that clinically if he keeps improving they won't check another one until a follow up visit. The right side of his heart that was enlarged earlier is also normalized. Oliver is gaining weight he now weighs 5 pounds 8 ounces! He still looks tiny but in the premmie clothes he is too tall, and the 0-3 months clothes are big all around.

9-10-10

Oliver hasn't had too many changes since yesterday. The doctors decided to keep the morphine at the same dose and no change with his oxygen until tomorrow. They did tell me that we're on the list to move over to Bay 4-5 now. That means that soon we will be in our own little room where there is a couch for me to lay on and nap, my own bathroom and there is actually a door to close so it isn't so loud.

Oliver got his PICC line out today and had another echocardiogram (ECHO) of his heart just to follow up from his previous 3 since they are still hearing a heart murmur. No official word yet on the result but the ultrasound tech said that it still shows a PFO (patent foramen ovale) which the doctors don't seem concerned.

Breastfeeding isn't going the best now that they started him on the oral morphine because he gets the morphine every 4 hours and feeds every 3 so he's very tired and fatigues fast when trying to suck. The lactation consultant came in today and said that I'm doing everything right, we just have to wait and let him tell us when he is ready to eat. Until then we will keep trying but he will get the bolus feedings through his NG if not successful.

I think that is it for now. Shawn comes back tonight and it will be a weekend alone with just the 3 of us... well and tons of Iowa and Iowa State fans flocking to Kinnick. GO HAWKEYES!!!

9-9-10

Oliver is 3 weeks old today! Yesterday after his bath and breastfeeding, it tired him out. He was having trouble sleeping due to some withdrawal symptoms including a high heart rate into the 200's, elevated respiratory rate into the 80's and irritability. I did have the nurse give him a dose of morphine in the evening because it's hard to watch your child work so hard to do normal things like breathing. After that dose of morphine and letting him settle down he did sleep well last night.

Today the nurse practioner talked to me about how I felt about going down on the morphine today. I stated that I would rather keep him at the 10mcg as he was at yesterday for today to let him come down slowly. She agreed but the attending physician wanted to change him to oral morphine anyway at an equalivalent oral dosage of 0.3mg every 4 hours. He did well with the change of the oral morphine and that actually relaxes him better than the continuous infusion of morphine he was getting through the PICC line. I breastfed him 3 times today and he's doing much better it's still just so confusing and hard to know if he is actually getting enough. Tomorrow the lactation consultant made an appointment to watch me feed Oliver.

Oxygen wise, they decreased his concentration today to 21% which is the normal concentration in the air but still at 1 liter. His saturations at that was in the mid to low 90s all day. He continues to have mild retractions to his rib muscles which means he does work hard to breathe at times.

Today I talked to the nurse practioner also about when we start normal newborn things like hearing test and vaccinations and the nurse gave me all the information and told me what I need to be working on to such as watching a few videos and reading more information. All the talk about discharge made me very excited although I don't want to rush anything and I want Oliver to tolerate the morphine and be able to eat and breathe. Oliver is running the show and all I can do is be prepared to take him home and help him along the way. Shawn comes back tomorrow and it will be a crazy weekend here in Iowa City on Saturday with the game. Just a side note on the game. I met Kirk Ferentz in the hall today as I was leaving! He actually said hello and asked me how I was doing.

9-8-10

Oliver had his first tub bath this morning that I got to help with. He liked it at first but I think I was taking too long for him and he was getting cold. He does like his hair shampooed, combed and brushed with a toothbrush for a little scalp massage. The nurse and decided that his hair now looks 3 shades lighter than before the bath.

Today the doctors decided to wean his morphine more to 10mcg/kg which means that if he tolerates this today he will go to oral morphine tomorrow. Wow - I can't believe it, this excellerated morphine wean is just that - fast. I hope Oliver does not show withdrawl symptoms though. They also decreased his oxygen to 1 liter still at 40% concentration.

Breastfeeding is getting much better. I was able to feed him at 6pm last night and he did well for almost 30 minutes on and off. Today at noon also went well and he didn't require any extra feedings through the tube in his nose (NG). He's really getting the hang of sucking and loves his pacifier.

More visitors set to come this afternoon. Great Grandma Mary, Great Uncle Jim and Great Aunt Cheryl are coming. Then Great Grandma Billie and Great Uncle Ron and Great Aunt Brenda are coming this evening.

9-7-10

Today started out rocky when Oliver's nurse practioner showed me his weaning taper schedule for the morphine. He would have switched to oral morphine on 9-12-10 but he wouldn't have been off of that until 9-27-10. That is 20 more days!!!! I asked her if he can go home on oral morphine if that was the only thing keeping him here and she said no they don't generally do that. So when it came time for rounds at 1100 I had emotional breakdown in front of the doctors when they told me he COULD go home on oral morphine if he is eating on his own and breathing better although I think his breathing is fine. I still don't know the date of discharge but I'm glad it's not 20 days now.

Today was a day his morphine was weaned again and they went down to 18mcg/kg. Then this afternoon around 2:30 the nurse said the doctors and nurse practioner decided to decrease it more to 15mcg/kg, a 5mcg drop from yesterday. They decided to do this because the taper they had started in Bay 1 was for a baby that would have been on the morphine for more than 30 days and Oliver isn't even 30 days old yet. I told the nurses what his withdrawal signs look like and that he usually just requires 1 PRN (as needed dose)of morphine to help with the withdrawal if he isn't tolerating the lower dose well. So far when I'm posting this I haven't seen any signs of withdrawal.

Today the doctors kept his oxygen the same and plan to decrease it from 2L tomorrow at 40% oxygen concentration. They also increased his feedings to 50ml every 3 hours (about 1 and 2/3 ounce) and told me what the breastfeeding protocol was. I tried breastfeeding again at noon today and it went a lot better than yesterday with the help of a wonderful little thing called a nipple shield. The nurse still gave him his full feed and charted he only sucked for a minute but I think he did much better than a minute of feeding. So much so that he spit up a lot of feeding on me after his bolus tube feed was done. Then when they checked the residual (amount left in his stomach) before the next feeding he had 15ml left in it which is more than 10% so they have to call the doctor about it. They weren't concerned about the amount left in his stomach.

Grandma Shirley came to visit us again and got to hold her grandson for the first time. His previous attending physicians Dr. Dagle and Dr. Segar also came to make a social visit to see how he is doing this afternoon.

9-6-10

Today was the day of the big move! Oliver moved to Bay 2 a step down unit still in the NICU. Bay 2 is similar but a bit smaller, his nurse has more than 1-2 patients, and it's a noisier because babies cry. The good thing is that babies can be discharged from bay 2. The discharge date isn't set in stone but I'm hoping it will be in about a week after they wean the morphine and he learns to feed. His doctor today stated that Oliver has done everything by the book as far as how to recover from the pulmonary hypertension but he just needs to tolerate the morphine taper and learn to eat.

Oliver got his first spongebath today and he, like most babies, didn't like it. They also put him in clothes and a sleeper although they were very big on him. Oliver also upgraded to a crib from a warmer bed.


He's using a nasal cannula on 2L of oxygen at 40% concentration to assist him in oxygenation but he will probably only be on it for a few days since he's doing so well. His oxygen saturation is at 98-100% on the oxygen. His morphine drip stayed the same today at 20mcg/kg but they discontinued the ativan. Oliver is more alert now and is getting on a every 3 hour feeding and awake/sleep cycle. Today we tried breastfeeding. The first attempt was not very successful but the second was a bit more successful but he still needed his full 40ml feeding through the NG tube. Hopefully tomorrow the lactation consultant can give us some more pointers.

Oliver had many visitors this holiday weekend. Shawn came on Friday and left this afternoon. My parents stayed with us Friday and Saturday night then left on Sunday and they couldn't get enough of him so they came back on Monday to visit again. Shawn's dad came to visit on Sunday and Grandpa Chuck held his grandson for the first time. My college roommate Stacy and her husband James visited on Sunday as well. My sister and brother-in-law also came today to visit with their family although the kids couldn't come in to see their cousin.

9-4-10

Oliver was here for his first Iowa Hawkeye game. The Preemie Project gives each child a fleece Hawkeye blanket and a knitted Hawkeye hat. We tried the hat on him and it is so big for his head it wouldn't stay on. Shawn and I also got to hold him this morning.

See the hat laying beside Oliver. It is so big compared to him.

Oliver has had a watery left eye that started yesterday that is now red and swollen today. Dr. Dagle states that it's probably from a blocked tear duct so they started him on an antibiotic eye drop. They also gave him a pacifier last night because he was so used to having a tube in his mouth and he loves it. They increased his feedings to 40ml today every 3 hours and even tried a drop of breastmilk on his pacifier so he would know the taste of it and associate a full stomach with oral eating. He loved the taste let me say, he would close his eyes and suck on it then once the taste was gone he would open his eyes and look at the nurse as if he was saying "that was it? I want more."

Today the doctors decreased his morphine drip to 22mcg/kg as well. That is pretty much all the changes they made today. This afternoon after his feeding, we changed his poopy diaper and then he went again once we got the clean one on. If that wasn't exciting enough we repeated this 3 times each time a new diaper was put on him. Finally we thought okay maybe mommy shouldn't change it but maybe daddy should. So, Shawn changed his first diaper with the help of the nurse.

9-3-10

Look at the before and after pictures, what is missing?

Before
After


That's right he was extubated this afternoon!!!! Now that he no longer has the breathing tube they put him on an oxygen nasal cannula to give him extra oxygen. They also changed his feeding tube so that it goes into his stomach through his nose so that his mouth can be unobstructed to learn to feed orally and so he doesn't pull it out as easily. He did really well with the extubation after a few position changes and finally with me holding him so that his neck was exposed and head back further so open up his airway.

They put him on a morphine weaning taper schedule so we now know that he may be here for at least 10 more days if all goes well. On 9-11-10 they plan on starting him on oral morphine instead of it through the PICC line. They decreased the morphine by 1 today to 24mcg/kg.


He was spitting up his feedings a bit now so they decided not to push it and increase them more but keep them at an ounce every 3 hours. So, I got to pick him up and hold him briefly today so that they could change his sheets. And, fittingly enough they put Iowa Hawkeye sheets on his bed so he would be ready for the game tomorrow. Tomorrow is going to be crazy here with the game. We have to be at the hospital around 7am so that we can get parking with all the tailgaters wanting parking as well. We do have a nice view of the stadium from the NICU and maybe can watch the game from the big screen on the scoreboard or at least we can see the score since we're so close.

They gave me a tour of the step down unit Bay 2-3 today since that is where he will go in the next few hours to days. It all depends on when they need his room he is in now. I guess they like to keep Bay 1 full so he is now 2nd on the list to leave because another baby was able to be extubated in the middle of the night so she will go first. Bay 2-3 seems just a little different and the main difference is that babies cry over there. Oliver hasn't cried yet since he was extubated but he was trying hard after they extubated him he was just so hoarse.

9-2-10

I can't believe that the most wonderful little man came into our lives 2 weeks ago today. It's amazing to remember back to those first few days and then to now and see the progress he has made. He really is our little miracle baby and a great fighter. I want to say a big thank you to all my Central Community Hospital coworkers for the care package yesterday. It is much appreciated. Shawn and I want to say a big thank you to everyone who is thinking and praying for our family. I believe in the power of prayer and that has pulled us through. They are talking extubation tomorrow or the next day which means he would leave this Bay 1 NICU where the critical babies are, and go to Bay 2-3, the step down unit. His nurse told me today that he is the first on the list out of here because he's made so much progress!

The stopped the viagra today because his lungs are doing much better. The ECHO they did once again yesterday still shows that he has the hole in his heart called a patent foramen ovale (PFO) that is nomally there in-utero then closes. They're thinking that it should close off once the pressures equalize and that the direction of blood is at least bidirectional which is a good thing. They don't know the cause of his high blood pressure because the renal ultrasound came back normal as well so they might have to put him on a med for his BP if it stays on the higher side. Today although it was down a bit even with the decrease of the morphine drip to 25mcg/kg. No withdrawal symptoms noted today while I was there. They also cut the scheduled ativan (med for restlessness) dose in half that he gets every 6 hours to 0.1mg. Oliver was very alert today looking around most of the day except right after he gets fed he drifts off to sleep. It is so great to see him more awake - he is so content being awake too. He's even starting to smile at us.

The doctors increased his feedings to an ounce now every 3 hours. They also put a PICC line (an IV type thing but it is more permanent) in his leg and he was so good for it. Once the PICC line was in they pulled out the umbilical venous catheter (UVC).

Oliver and I had a lot of visitors today. My God parents Arlyn and Karen visited as well as my friend Michelle and his grandpa and grandma Peterman. He was a good boy for all of them and even let them see him awake and with his eyes open. Tomorrow daddy will get to see him again and see how much progress his little boy has made in the last 5 days.

Worth the wait!

After 12 days of patiently waiting, Oliver made enough progress that yesterday his nurse let me hold him!!! It was the best 45 minutes of my life. It was quite the ordeal to get him into my arms including 2 nurses to move the lines and equipment and 1 nurse to move him. He tolerated it well and even opened his eyes and looked at me. At first they told me that I would have to wear gloves so I did but then the nurse came in again after talking it over with other nurses and said that I could take them off and that might be good for him to actually feel touch without gloves on. I may be partial but I think I have the most beautiful baby in the world. Here's some more pictures of him.

He's wide awake