Back to the Beginning

I didn't mean for it to take so long to post about everything that happened with me and the babies. It was harder than I thought it was going to be to get it all on paper. There is probably more information than anyone really wants to know but it was important to me to write it down so I don't forget.

We had our regular routine appointment to check on the babies on March 19th at 22 1/2 weeks. We did ultrasounds every 2 weeks to check the growth and up until then everything had looked wonderful. They kept an extra eye on the girls though since they were identical and shared a placenta. At this appointment they started to notice a difference in the girls' weight. That's the first sign of twin to twin transfusion. It happens when there are abnormal connections of blood vessels in the placenta so a portion of one twin's blood gets sent to the other twin rather than back to the mother. The smaller twin (Macie) loses a lot of amniotic fluid and has severe weight restriction. The larger twin (Ellie) gets more blood than needed and can have heart failure due to the extra fluid. It's very serious and with no intervention one or both twins can die.

There is a treatment for twin to twin transfusion. There is a procedure done in Seattle where they go in and laser the blood vessels that connect the twins. It is very risky and doesn't always work but it is the only shot for both twins to survive. Since the procedure is so risky, there are certain criteria for qualifying. We met all but one. The doctor wanted to keep a close eye on the  situation so he had us come back to Boise the following day. He told us to be ready to go to Seattle at any moment because the surgery to separate the placentas could only be done  until  24 weeks so if it was needed, we would need to get there as soon as possible.

The ultrasound on Tuesday showed slight improvement from the previous day. Not much, but enough to be further from qualifying for surgery. We were so frustrated because we just wanted to fix the problem. We felt guilty because we wanted things to get worse before it was too late for a solution. We were scheduled to return to Boise on Thursday to check the progress. Thursday's ultrasound was worse but still not quite bad enough. I was told to take it easy for the weekend and check back on Monday.

I was not feeling well on Monday. We had been in Pocatello and Idaho Falls over the weekend and even though I took it easy, I assumed I had just done too much. I couldn't really put my finger on what was wrong. I just felt crappy. The nurse took be back to the room. I had gained 8 pounds since the previous Monday, my blood pressure was very high, there was protein in my urine, and my reflexes were hyperactive. The nurse told me that I would be admitted to the hospital until the babies were born.

Next, we went in for our ultrasound. That's when we found that our little Macie no longer had a heartbeat. No one expected anything like that to happen so quickly. We were devastated. They doctor was also concerned for Ellie. If twin to twin transfusion was the cause of Macie's death, Ellie was at risk as well. Toxins from Macie could be transferred to Ellie and cause problems. I was only 23 weeks so delivery at that point was out of the question. We were told to decide what we wanted to do if Ellie started to look unhealthy. We could either deliver both babies too early and risk them both or do nothing and give Nate the best chance of making it closer to full term. We were not prepared for a decision like that at all. The other problem was my pre-eclampsia. If my health started to go bad, then the babies would come, no questions asked.

As the week progressed in the hospital, my health continued to get worse. I was having severe headaches that even heavy duty pain killers wouldn't touch and I started having tremors. My labs didn't look too terrible but they were starting to worry about seizures and stroke. We were praying that I could hold out as long as possible in order to give the babies the best chance we could. Early Sunday morning (April 1st) my doctor finally said it was time. I felt like a failure for not being able to hold out any longer but I knew that he wasn't going to let me argue or beg. Within a half hour I was ready and the doctor started the surgery.


Macie Christine and Ellie Carlene were born at 6:15 am. Macie weighed 14 oz and was 10 inches long. Ellie was 1 lb 6.2 oz and 11 1/2 inches long. Nate Tyler was born at 6:17 am and was 1 lb 5.9 oz and 11 1/2 inches long. The babies were taken to the NICU with Todd and the doctor started finishing up the surgery. I started to realize something was wrong because the babies had been out a long time and he still wasn't finished. After about 20 minutes, he looked over the drape and told me there was a problem. One of the placentas would not detach. He told me he'd tried everything he could but I had already bled much more than he was comfortable with and he was going to have to do a hysterectomy.

It was a very long day for poor Todd. After the surgery, I was sent to the ICU because I had lost so much blood. I don't remember anything else from that day and Todd was in a daze as well. Things didn't look great for any of us.

I received a total of 7 units of blood on Sunday. I used all of the hospital stash of O negative and had to use some O positive as well. My blood pressure was still pretty high but was controllable with medication. The plan was just to get me stabilized from the blood loss.

 I didn't wake up until late Sunday night. Todd was there trying to show me all of the pictures he had taken of the babies but I couldn't see anything. The pre-eclampsia had caused double/blurry vision.

I had hoped to get out of the ICU to see the babies on Monday but the doctors were concerned about my vision as well as my lungs. A chest x-ray had shown quite a bit of fluid build up and they were concerned about my breathing and oxygen levels. I had 1 pretty nice dip in oxygen that day which bought me another night there.

By Tuesday morning my vision had improved slightly and I hadn't had anymore major problems with oxygen levels. The nurse I had that day was wonderful! She worked so hard to get me out as soon as possible so I could get down to the NICU to see the babies. I am so grateful for her.

It was about noon by the time we made it down there. They were so small and attached to so many machines but they were beautiful. I was only allowed a very short visit that day since I was still pretty unstable myself. The nurses tried to update me on their problems and plans for treatment but I only remember basics. They were both on ventilators but Ellie's was a bit stronger than Nate's. I didn't find this out until later but Nate had pulled out his breathing tube at one point the day before and had to be worked on for quite some time before he was stable again. Nate's biggest problem was his blood pressure and Ellie's was her blood sugar. Both were too high and causing the bulk of the problems for them.

Wednesday started with the NICU doctor, patient care coordinator, and social worker coming into my room...not a good sign. They said Nate's high blood pressure was caused by a PDA in his heart. A PDA is a hole in the heart that all babies have but that normally closes at birth. It is very common in premature babies for that hole to stay open and cause problems. Ellie's was small and not much of a concern but Nate's was wide open and the cause of most of his problems. He needed surgery right away to clamp it shut. We were total wrecks that day but he pulled through and the surgery was successful. His blood pressure instantly improved and he was much more stable.

Thursday was a terrible day. I woke up feeling ok but as the morning went on I started to feel really tired. I had assumed that I had done too much the day before and decided to try and sleep during the afternoon. Around 1:00 I got up to use the bathroom. I was freezing so I grabbed another blanket and got back into bed. By the time the doctor came in about 5 minutes later, I was shivering uncontrollably and my temperature had gone up to 103 degrees. My other vital signs were unstable as well so I was sent back up to the ICU. An abdominal x-ray showed that my digestive system had shut down causing a UTI and sepsis. They also found a large blood clot that had collected behind my incision that they were concerned may have been infected as well. I was started on several IV antibiotics and kept for further testing.

Late that night my nurse woke me to tell me I had a phone call from the NICU. It was the doctor that was taking care of Ellie. She said she had very quickly taken a bad turn. She wasn't sure of the cause but her heart had stopped and they were unable to get it restarted. She said Todd was on his way over and then they'd bring her up to me. We were able to spend much of the night with her and we were so grateful for that time.

Ellie

I spent 2 more days in the ICU before I was released back to antepartum. I was still on IV antibiotics but was feeling better. The following day was Easter, 1 very long week since the babies had been born. We were looking forward to a relaxing day. That morning we got another visit from the doctor, patient care coordinator, and social worker. They had found a hole in Nate's intestine and he was leaking stool into his abdomen. It was likely caused be a lack of blood flow from before he had his heart surgery. He needed to have surgery right away to remove the diseased part and asses for further damage. They were concerned because if too much of the intestine was dead, they would be unable to do anything and he would not survive. Fortunately, they only had to remove 4 cm of intestine. That small amount should mean he won't have any long term effects. Such a blessing.

The following Wednesday, 2 1/2 weeks after being admitted, I was finally released from the hospital. I was still weak and bruised but overall feeling better.

Day 59

2 lbs 15 oz today! I can't believe we are getting close to 3 lbs! Hopefully his next 3 pounds will go a lot faster than his first 2. We are anxious to get this last surgery done so we can take him home! We are definitely starting to get homesick.

His feeds are going well still so they are going to bump him up to 13 ml today. That's a new record for him. We are hoping he can keep going so we can get rid of his IV feeds and keep his little liver healthy. We're slowly getting closer.

The doctor has started to wean him down off of his CPAP pressures today too. He's down to a PEEP of 6. Once he's down around 5, they can try him on a regular oxygen cannula. The goal is to have him on regular oxygen by 34 weeks. That's only another week and a half! Once he's on regular oxygen it will be so much easier to get him out of his bed and hold him. The regular cannulas are so much smaller and more comfortable for him and he won't be attached to the giant CPAP machine anymore. We'll get to hold him twice a day once he switches over. I can't wait!

Day 58

Another good week for Nate! He is tolerating his feeds well and is almost back up to where he was. He's gaining weight like a champ too. He was 2 lbs 13 oz this morning! He's almost to 3!!! We can't believe how much he is changing. He's getting so chubby and much more alert when we wake him up for cares. The nurses think he is just the cutest thing when he's awake showing off his fun personality.

His breathing has improved a lot this past week too. He is now only having spells when we are doing his cares and when he is acting naughty. Yesterday he had 3 minor spells that weren't associated with cares...during the first one I looked in and saw that he had completely pulled with cannula out of his nose, the second one he had it in his mouth and was sucking on it, and the third he was on his tummy and had turned his head so he was face down in his blanket. Silly boy!

Here are some new pictures of Nate. He has really filled out a lot this week. He grows a new chin everyday :)

Here he is with his new feeding tube. He LOVES having his mouth free!

His binki is his new best friend. He has his mouth open waiting for someone to put it in pretty much anytime he is awake. When it's in, he guards it :)

Day 53

Nate had a big day today. He started off the day getting an increase in his feeds. They are increasing it 3 ml every 12 hours. He'll be back up to 12 ml in no time :) they also stopped his antibiotics today. The blood and urine cultures came back clear and his last x-ray looked great. Apparently that whole mess was just caused by some extra gas and not anything too major. He also got a new feeding tube today. Until now, he's had a tube going through his mouth down to his belly. He has become very good at using his tongue to work it out enough to get his fingers around it and pull it out. His nurses have to replace it multiple times per day and he hates it. He gags and cries the whole time. Since he is no longer on his breathing mask, his nurse today decided he could have a tube that goes from his nose to his belly instead. He didn't like it going down any better but it will be much harder for his to get it out and much easier to suck on his binki. So far, he loves it! This afternoon, Nate got his first eye exam. With preemies like Nate there is a 90% chance of having eye problems. They can range anywhere between mild nearsidedness to complete blindness. They start eye exams at 32 weeks and repeat them every week or 2, depending on what they find.  Blindness is usually caused by a detached retina which is something, that if picked up early, can be partially resolved with surgery. Since Nate was born so early, he has a higher risk of more severe problems. Fortunately, this first exam didn't show any problems. Unfortunately, that doesn't mean he won't develop them later on. He will have another exam next week.

Day 52

It was a good day for the little man. Another follow up x-ray looked much better so he's started back up on his feeds. He's very happy about it too because he was starting to get pretty hungry. They are starting off super small and super slow just to make sure all of the issues have resolved. He'll get 3 ml every 3 hours today. He was at 12 so it's a less than he was getting before but if he tolerates it well today, they'll start increasing again tomorrow. So far he's doing great.

The x-ray also showed some fluid in his lungs again. Since he hasn't been able to have anything by mouth, he hasn't received his diuretic for 2 days. They wanted to see how he'd do without it so they didn't start him on an IV one. Apparently he still needs it because they gave him a dose through his IV today. Hopefully it doesn't take away too much of his good weight gain...he was 2 lbs 6.3 oz today :)



We want to share just how much Nate has grown over the past 52 days. It seems slow until we look at these pictures. The first one was taken when Nate was 2 days old. The second was on Saturday. 

Day 51

Nate has graduated!!! Thursday, his respiratory therapist was starting to think that maybe Nate needed a longer break from his mask. His poor little head was starting to look pretty deformed form being squeezed in there for the past 3 1/2 weeks. The doctor told him he wanted to see how Nate would do with no rate while still on his mask and then they'd think about switching him to the cannula. He did so well that night that they wanted to surprise me Friday morning with a whole new baby. It was so great to see my little Nate's handsome face again! His head is already back to normal shape and he is so happy to be able to hold his ear again. He hasn't let go of it since :) The cannula is still a CPAP. The only difference is he doesn't have a consistent rate running through reminding him to breathe. It's a great step forward for Mr. Nate! We are so proud of him!

The past week or so had been fantastic for Nate. He made a ton of progress with many of his problems. He must have figured it was time for some trouble because Sunday was a pretty rotten day for him. Early Sunday morning his nurse noticed his belly looked really bloated and discolored. These can be signs of either another hole in his intestine or infection. They took an x-ray which showed a ton of air but no real signs of other problems. Just to be on the safe side though they stopped his feeds, did blood and urine cultures, gave him a blood transfusion, and started antibiotics. Poor Nate sat through 2 whole hours of being poked and tortured. He was a very good boy through all of it but he stayed awake the entire time. By the time the nurses were finished, Nate was completely exhausted. He slept the rest of the day without a single peep. He's usually a wild man and is always squirming around in his sleep so that was very unusual for him. The doctors have been pleased with his progress and are thinking it will resolve without any problems but have decided to keep him off feeds and on antibiotics for at least another day just in case.

Today was a much better day for Nate. He finally got his spunk back. He threw a full on fit while I was holding him today. This past week, he's learned how to lift up his head and flip it to the other side while we hold him. We were very impressed with him but we soon learned it makes it harder to hold him because he is always wanting to move his head and it takes him longer to calm down and sleep. Today when I held him he kept putting his face directly into my chest. The problem was he couldn't breathe with his nose smashed up against me so I'd turn his head to the side. After 3 or 4 times of him promptly squishing his face and cutting off his air supply and me moving his head back to the side, he lifted his head up, arched his back, and started crying with real tears and everything. I couldn't help but laugh at his attempt to get his way. It didn't work though because all of the energy he put into his fit wore him out and within a minute his head was turned to the side and he was sound asleep. Little turkey :)

Day 47

So it turns out Nate's weight yesterday was a little of both scale error and fluid build up :( He lost 2 oz but he's still over that 2 lb mark! A couple days ago the doctor took Nate off the diuretic that he's been on for the past week. Last night his oxygen needs almost doubled what they have been and he started looking very puffy. He decided Nate needed to start them up again. That will most likely mean another day of weight loss but we don't really want water weight anyway. Once he got the medication on board again, he has been breathing and looking much better.

Nate also had a big day for poop! Since his belly surgery, his poo comes out of a little opening, or stoma, just to the side of his belly button. Until today, they've kept it covered with little pieces of gauze and change them when they change his diaper. It's worked quite well until the last week or so. He now gets poop everywhere! No matter what the nurses try to do to contain it, somehow he seems to make a huge mess. There are stoma bags that can be attached to his belly to catch everything that comes out but the surgeon doesn't like them on tiny babies. She wanted him to reach 1 kg before he could have one. Since he soared past 1000 grams yesterday, he was fitted for a bag today. The nurses are very happy they no longer have to change his bedding and bathe him every 3 hours and I held him today and stayed clean for the first time all week :)

Day 45 & 46

Nate is growing like a weed!!! He flew past the 2 lb mark yesterday weighing in at 2 lbs 2 oz. This morning he decided to get almost half way to 3 lbs. You read that right, Nate's weight this morning was 2 lbs 6.4 oz!!!! Now, the doctor isn't convinced that this is real weight. He thinks most likely it's either fluid build up or scale error but we're going to see what he weighs tomorrow to know for sure.

Nate is also starting to grow in length. He was 11 1/2 inches long (3rd percentile) when he was born. We knew we had no hope of having tall kids but Todd started to get concerned when he dropped down to the 1st percentile. His poor growth curve for length was a flat line. He finally had a growth spurt though! Last week he measured in at 12 1/2 inches and this week he was 13 1/2 inches. Now Todd's convinced we've got an NBA player. I'm not so sure :)

Other than some major growth, the past couple of days have been quiet. Boring is good in the NICU! Health wise, Nate has been doing really well. Normal naught boy behavior has been a problem though. I think he has decided that now that he's 2 lbs he's too big for all of the silly hospital stuff. He has become very good at pulling out his feeding tube. The nurses try and tape it down but Nate always finds a way to get it out. He pretends to be sucking on his thumb and then hooks it under his tube and gives one big pull. He has also decided that he no longer needs his CPAP mask. All day today he would grab the mask over his nose and push it off to one side, just enough for it to be useless. His oxygen levels have been going down more often today so we started watching him. Sure enough, every time he'd have a spell, we'd look in and his mask would be off. Naughty boy!!

I only have 1 picture of Nate to share today and it requires a little explaining. Nate has had many roommates during his 6 weeks here. Most of them are here for just a few days and then get sent home. His latest roommate came in last week. He is a full term baby and quite big but he has a lot of health problems and will be here for a while. He had surgery a couple of days ago and has been been in quite a bit of pain. He's been sedated for the most part but he'll wake up every once in a while screaming. This kid is loud!! The doctor tried cutting back on his pain medication today which they quickly learned was a big mistake. He screamed for an hour and a half straight. Todd peeked in at Nate during the chaos and found him like this...

Day 42-44

Nate had a very busy weekend. He had loads of visitors on Saturday. We love visitors but I think we over did it with him this weekend. He had a rough evening after everyone left. Being cute for everyone is a lot of hard work for such a little guy. His nurse told us we need to be careful to limit visitors to 1 or 2 throughout day for just a few minutes. Oops...we'll have to coordinate better I guess :) Sometimes we forget how sensitive he is.

Nate also had his first Mother's Day :) He did a great job. His nurses helped him make me a card and Todd gave up his day to hold him so I could have some extra snuggle time. Nate also decided to get me a present all by himself. When I was putting him back in bed after holding him we discovered that he had pooped. This wasn't just any poop though. It was a full blowout poop. We were both covered! The nurses teased him the rest of the day. They are trying to teach him how this whole Mother's Day thing works so he'll know what to do next year.

Nate had his share of ups and downs over the past few days but overall he's doing well. The doctors aren't planning any major changes for him. They just keep waiting for him to get bigger. We are starting to think that Nate is afraid of getting too big. He just won't quite get himself to the 2 lb mark. Yesterday he weighed in at 1 lb 15.5 oz. We thought for sure he'd make it to 2 lbs today. He's a little trickster though and decided he'd stop at 1 lb 15.9 oz! Little turkey! He's so close!!!

Day 41

No big changes for Nate today. The doctor is going to go up on his calories just a bit to see if we can get back to some good weight gain. It has slowed down quite a bit over the past few days. That and another blood transfusion and hopefully he'll be one happy boy tomorrow. Other than that he's been a little champ! Since he's been so good, I'll make today a picture day :)

Nate's breathing mask works by puffing air down into his lungs to keep them inflated. He has a nasty habit of hanging his mouth wide open. When he does that the pressure meant for his lungs comes right out of his mouth. We have tried to come up with creative ways to get him to keep his mouth shut but none of them have worked too well until this one...

The chin strap has worked well for Nate for the past week or so but after his throwing up incident on Tuesday they decided the chin strap might not be the best option for him. This picture is dark but while I was holding him last night I tried to hold his mouth shut so he wouldn't have such a hard time keeping his oxygen levels up (I have spent many hours sitting next to his bed holding his mouth shut...little stinker) He grabbed my finger and held on for an hour and a half. My wrist was totally cramped up by the end but it was totally worth it :)

Last but not least...some of Nate's many cute sleeping positions. He has to have his hands up by his face. If you swaddle his arms, he will NOT sleep. I'm pretty sure I take a new picture of him sleeping every day.

And my personal favorite...

Is he not the cutest thing you've ever seen?!?!

Day 40

Nate is 30 weeks today! I can't believe he's been with us for nearly 6 weeks already. Time is going by so fast. Nate's nurse today was one of the nurses that was with Nate and Ellie during their first week. She was there the day I got to see them for the first time. I hadn't seen her since until today. She was one of our favorite nurses during that very difficult week and seeing her today reminds me just how far we have come this past month. Nate had a quiet morning. The doctor was very pleased with him when she came in to see him and said she's not changing a thing. We like days that allow Nate to just rest and grow. Those are days that mom and dad get to relax a little bit too :) I was able to talk with one of the nurses yesterday about some of the things that we can expect when Nate comes home. Apparently life at home with a premie like Nate is a lot different than life with a healthy baby. She said he'll have chronic lung disease. If everything keeps going well, he'll grow out of it once he hits about age 8 but the first couple of years are going to be difficult. We are going to have to be very very careful not to get Nate sick. A tiny cold to us can mean months in the hospital and could be fatal for his sick little lungs.  Nate is going to have to stay home with very limited visitors for the first 2 years of his life. No church, no grocery store, no playdates, no children over at our house, and no adults that have been exposed to even the tiniest sniffle. I knew that we were going to have to be careful but I don't think I realized just how different our lives are going to be.

Day 39

Nate had a much better day today. When I got to the hospital he was getting 22% oxygen. That's much better than the 40% he was up to yesterday. I think it was his way of saying sorry for giving me a heart attack and a lot more gray hairs yesterday :) He had a follow up chest x-ray this morning which looked a lot better so he will stay on the diuretics long term to help keep the fluid in his lungs under control. The doctor also started his feeds back up again. He is pretty sure what happened yesterday was just normal baby spit up that went the wrong direction. That's reassuring because throwing up can be a sign that his tummy is not tolerating his feeds and they would have to stop them long term. He can get all of his nutrition through his IV but it is hard on his little liver so oral feeds are the best for him. Although it's unlikely, getting to all oral feeds without any IV nutrition is ideal for him. As far as weight gain, the doctor didn't expect any yesterday because he was given the diuretic and would lose all of his water weight. He anticipated about a 2 oz loss for him. Good news is he only dropped about an ounce! 2 pounds, here we come :) This evening we were able to meet a family that was in a very similar situation as us 3 years ago. They volunteer to help other parents cope with their stay in the NICU. They had twin girls born at 25 weeks and lost one. Their little girl is now 3. We have visited with them at the hospital before but tonight they came over to the house with their little girl. It was so great to talk with them and be able to ask them questions. Having someone to talk to that has been in the same situation has helped me more than anything else. We are so grateful to them for taking the time to help us.

Day 38

They always tell you in the NICU that there will be many ups and downs. They say that and I think I understand but it seems I always forget that when he's having a good day. Every good day I can't help but think the worries are over. I know they tell you that so you're not so disappointed on the bad days but it's so hard to remember. Nate went back a half step this morning. His oxygen needs went up to about 44% which is quite a difference from the past couple of days. The doctor thinks he's probably taking on fluid in his lungs again so they did a chest x-ray and will start him on some diuretics again. He seems to respond to them well so hopefully he'll be feeling better tomorrow. Poor little guy . His morning wasn't all bad though. He did gain another ounce and a half. He's so close to that 2 lb mark! Keep growing Nate! He also had a visit from his occupational therapist. She works with him once a day stretching his arms and legs and massaging his face and head. He LOVES it! It's so cute to watch him. He gets his grumpy face ready as she unwraps him and wakes him up but as soon as she starts stretching his legs his face just melts into the most content look. I can just hear him thinking "Ooo that feels nice". He is such a funny boy and everyone just loves him. This afternoon he gave us a good scare. Todd and I had just left to get some lunch. Half an hour later the hospital called. It's never good news when you get a call from them. Nate had vomited some of his milk and his breathing mask pushed it through to his lungs instead of letting it out. Apparently he struggled for quite a long time and ended up needing a lot of help to recover. By the time we got there he was doing better and an hour later he was back to where he had been previously. The doctor said that was a good sign and they most likely wouldn't have to put him back on the ventilator. They did totally stop his oral feeds though and inserted a tube down to his belly to keep everything suctioned out for now. Lesson learned today...good day for Nate = good day for mom. Bad day for Nate = mom being a crying mess and not wanting to leave the hospital.  Let's hope tomorrow is better.

Day 37

Todd had to go back to Twin Falls to work for today. He's gone back a couple of times in the past few weeks but I've been too wimpy to be by myself overnight. He has been waking up at 4 and driving to Twin before work and coming back to Boise after he gets off. What a wonderful husband I have to do all of that driving in one day just so I don't have to be by myself.  Nate's been so good the last couple of days though so I told Todd to go ahead and go last night. Nate must have known I was nervous because he performed like a champ throughout the night. This boy already knows how to be good to his momma. I am one lucky girl :)


Even better news...Nate is now 1 lb 13.1 oz!!! He gained a whole 2 oz yesterday! That is a new record for him. The doctor decided not to change a thing for him today just to see how he does tomorrow. Maybe we've found his happy place? I sure hope so!

He had kind of an up and down morning with his breathing. He's definitely keeping his nurse today busy. He's had as low as 23% oxygen running through his CPAP but all of a sudden he'll decide he's not happy and they'll have to creep him up a bit. They will bump him up 1% and after 2 minutes he'll be running too high. He's kind of a stinker like that!

This afternoon was pretty much the same as the morning. Up and down, up and down. I'm pretty sure he just didn't want anyone to sit down for a second today. I did get to hold him though. Since Todd works all week I let him have the weekends to hold Mr. Nate so it had been 2 whole days without any cuddle time for mom. It was great and he was a very good boy.  I wish I could spend all day and night with him. I hate it when I have to come home :(

Day 35 & 36

     Nate gets a gold star for his behavior the past 2 days! He has gained weight AND been a rock star with his breathing. Last week, he had been getting anywhere between 30-40% oxygen running through his CPAP and still struggling with frequent spells. For the past 2 days he has been staying between 21-34% with fewer spells. Room air is 21% oxygen so he is doing about as well as he possibly could be on his CPAP. They have even started to wean him off of his rate. In order for his to graduate to just a regular oxygen cannula, he has to first wean off of his rate and then off of his pressures. He is still too tiny to do all of that anytime soon but he is definitely on the right track!

     Not only is Nate being a very good breather, but he also gained a little weight...Yay!! His weight was down about a 1/2 ounce yesterday but he managed to gain a whole ounce today. He's up to 1 lb 11.2 oz. His doctor is so pleased with him that she agreed to go up a very tiny bit on his feeding. We'll see how he does tomorrow :)

     This poor kid's biggest struggle is going to be his weight. Nate had surgery to remove a diseased part of his intestine at 1 week old. It wasn't much but it left him with only about half of his small intestine for absorbing nutrients. He has to be a whopping 6 pounds before he can have a follow up surgery to reconnect everything. It seems like he'll never get there but the nurses and doctors assure us that one day we'll look at our little man and not remember just how small he was. I can't wait until that day :)

Nate during cares with no mask. He's very feisty when they start picking on him but soon gives up and assumes this position. He just wants them to hurry up so he can get back to sleep. This picture was actually from a week ago so he doesn't look as "chubby" as he does now :)

Day 34

Nate is 1 lb 10.7 oz today! Check out those little cheeks!!!

Nate had a much better day today! He has struggled this week and it has been sad to watch him have bad days. The doctors have been pushing him hard to gain weight and he finally reached his breaking point. His milk feeds have been increased everyday over the past week and a half. They have been paying special attention to his poo to make sure he is absorbing the milk and not just "dumping" it. It is common for babies with only half a small intestine for milk to come straight through without any absorption. Once that starts to happen it is hard to get it back to normal. The past day or two he has started to have very watery poo that looks more like milk than poo so his feeds have been cut back to 7 ml every 3 hours instead of the 11 ml that he was supposed to increase to today. It's a step back but better safe than sorry!

Nate also gets some nutrition through his IV since he isn't at full milk feeds yet. The doctors had been increasing his fluid each day as well to try to finally get this kid to gain some significant weight. He decided he didn't like that either this week. His lungs have started to collect fluid which has made it hard for the poor guy to breath and keep his oxygen levels up. So the doctor cut that back as well today. Hopefully he will continue to gain weight with all of these calorie cuts. 

So I guess that doesn't really sound like he's had a good day but he really has been better! This week Nate has been having a lot more "spells" than he usually has. When he spells either his oxygen levels go down very low, his heart rate goes very low, or he has a combination of both. Until this week, he has had some mild spells where his oxygen goes low and he pulls himself back up with a little extra oxygen. He has now started to include dropping his heart rate as well which scares us every time. He's also needing more help recovering from these new scarier spells. The changes that were made today are to try and reduce these spells. So far they are working! He also got another blood transfusion yesterday which always perks him up a bit. He only had a few scary spells today which makes us feel so much better. 

The best part of the day...I got to snuggle with my boy today! We get to hold Nate once per day as long as he is having a good day. Yesterday I wasn't able to get a turn because he was getting blood transfusions throughout the afternoon and evening and they needed to keep a close eye on him. I got to hold him for 2 hours today though and it was wonderful! He was such a good boy the whole time and only dropped his oxygen levels slightly once or twice and recovered all on his own. We both took a much needed nap and woke up feeling a lot better. 

Nate the Great

10 things that are great about Nate

1. He has tons of white blonde hair (just like his daddy did when he was little)

2. He loves to suck on everything - his thumb, his binki, the end of his IV...EVERYTHING

3. He loves to hold on to his left ear and is very sad when it's covered up and he can't find it :(

4. He HATES getting his nose sucked out by the respiratory therapist and tries to push their hands away.

5. He has a very good grumpy face that he pulls every time his nurse wakes him up.

6. He was born on April fools day

7. He loves to be held by mom and dad

8. He is very strong and surprises everyone with the strength in his skinny little legs.

9. He loves the little swabs dipped in water or milk that he gets to wet his mouth.

10. He's very sneaky and somehow always seems to get his hand in his poo.

Holding his ear and sucking his thumb

Updates

     I want to start this post by thanking EVERYONE for all of their thoughts and prayers for us and our little babies. We appreciate it more than anything else! I have been feeling guilty about not being very good about updating everyone on a regular basis. I have been overwhelmed trying to call everyone back and give daily updates so I've decided that in order to be able to spend more time with Nate, I'll take some time each day to update the blog for people who are wondering about our little man's progress. I've started a post about the events leading up to now but it will take me quite a while to finish that long story.
     Now that Todd has gone back to work, Nate and I have found ourselves a pretty good daily schedule. I get up with Todd at 6 to pump and get ready. The doctors are usually in Nate's room going over the daily plan around 9 so I try really hard to get over to the hospital as close to 9 as possible. After the doctors come through it's time for Nate's morning cares. They do cares on Nate every 3 hours and I love to be there to help. They change his diaper, clean up his poop, take his temperature, and do some other measurements. They also start his feedings a those times. At his 9:30 and 3:30 cares the respiratory therapist also takes off his breathing mask (CPAP) and gives his poor little nose and head a break. I especially like to be there for those cares because it's the only time I get to see his cute little face without anything covering it up. After 9:30 cares Nate gets to take a much needed nap (his cares totally exhaust him).  During the next couple of hours I pump again and stare at my handsome little guy until he's had enough of me then wait until it's time for his next cares at 12:30. It's the same schedule throughout the day until Todd gets off work. We spend some time with him in the evening and come back for dinner around 7. It seems like 10 hours spent at the hospital each day would be boring but it actually goes by very quickly and I hate it each night when we have to leave.