A little anemic

The night before last, Eli was having quite a few spells. None were very bad, but he was having more than usual. A blood sample showed that he was a little bit anemic. His nurse told me that a large majority, if not all preemies have anemia to some degree. Anemic means that he does not have enough hemoglobin, or red blood cells. The red blood cells are made in the long bones of the body (arms and legs) which, on a premature baby, are very small. His body is producing hemoglobin, just not fast enough. The red blood cells carry oxygen, so even though he may be breathing properly, his blood can’t transport oxygen to his body efficiently. He received a blood transfusion yesterday and another one today. Hopefully he will not need another one, because too many transfusions will send the message to his body that he doesn’t need to produce any more red blood cells because he already has enough. The blood he received had the plasma removed, so it was only hemoglobin, and was about 2/3 oz each time. His nurse last night said she could already tell he was improving after the first transfusion. She said he looked a lot less pale and was much more active. I noticed that he seemed a lot more tired at our last visit, too, so hopefully this will help with that! She said that he had fewer desats last night as well.

Also, his nurses have started to fortify his milk (now 25 mL per feeding–almost an ounce!) to give him some extra calories. Since he is so tiny, he uses up a lot of energy just breathing. Normal breastmilk has 20 calories per ounce, and the fortified milk has 24 calories per ounce. I am hoping this will beef him up a bit!

*EDIT* Eli was spitting up a lot today so they did an x-ray of his stomach. His stomach itself looked ok, but it had a lot of air in it, probably from the CPAP. They had to insert an OG (orogastric) tube down his throat to remove the air and as a result had to stop his feedings for a while. The pediatricians told me that this could happen (not that he’d get air in his tummy but that they might have to stop feedings at times for one reason or another) but it doesn’t make it any less frustrating. I feel so helpless. Now he has to go back to IV nutrition. At least they already had an IV in him for the transfusion and didn’t have to stick him twice….

No more PICC line!

Yesterday, Eli started feedings of 21 mL, so he is now taking in all of his nutrition from breast milk and doesn’t need to receive any from IV! The only other thing he got from his IV was caffeine–to keep him stimulated to help him breathe–which now he takes orally. Today he is all the way up to 24 mL, and is doing well with his feedings! He is still staying right around 3 pounds; actually, last night he weighted 3 pounds exactly. His nurse said that it’s ok, because babies are going to lose and gain weight, and the general trend is a weight gain. I assume that now that he’s eating more, he’ll put on some weight soon.

Here is the rundown on his CPAP settings. There are two settings; one is pressure and one is the percentage of the air that is oxygen. He started out with a pressure of 10 and is now at 8. Once his pressure can stay consistently down in the 20’s, close to what we normally breathe, his pressure gets turned down a notch. Then his oxygen level gets turned back up and gradually back down as he begins to tolerate the changes. His oxygen level today has been around 30%! Once he is doing well at a pressure of 6 and an oxygen level of 21%, it will be time to try taking him off CPAP.

I changed two more diapers yesterday. It’s getting to be the highlight of my visits! Once I get into the Ronald McDonald House, I’ll hopefully be able to be there one evening when he’s getting a sponge bath and I can help with that, too. I can’t wait until he is stable enough to hold and do kangaroo care.

Sadly, Chuck’s last day in OSU’s NICU is Monday. I’m very disappointed about this! Because OSU is a teaching hospital, the staff rotates every month to expose the residents to all of the different aspects of their job. I’m honestly not sad to see his attending physician go (he’s never even introduced himself to us, nor does he say hello or ask if we have questions), but I hope that his new resident is as great as Chuck.

On a side note, the part of the NICU where Eli is staying has 8 babies in it. It is sectioned off into 4 “pods,” so there are 2 babies in each pod. Eli’s new roommate is a girl, named Violet Marilynn (ours is the best-named pod!). Yesterday, when Seth and I were going in, we ran into our high school biology teacher walking out. Turns out Violet’s Daddy is her nephew! Small world, huh?

Dirty Diapers

Eli is two weeks old today! For the first week of his life, he didn’t have any bowel movements. Then, after the first time he pooped, it was days before he did it again. The nurses were starting to think the might have to give him a glycerin suppository to get things moving, but he started pooping regularly on his own. Yesterday, I got to change his diaper for the first time, and guess what he decided to do–Poop! He did not make my first time an easy one! I was nervous to change his diaper for the first time, because he seems so fragile, and I don’t have a lot of diaper-changing experience, but it was a great milestone and now I can’t wait to change the next one! I delegated Daddy to do it next though! My friend Stacey took pictures, but I can’t get the computer to read the SD card!

Eli is still doing much better as far as his breathing goes. He is still having some small spells, but they are mostly brief and in the low-80’s. His feedings are going very well! He was at 14 mL yesterday and the doctors ordered an increase for today. When I talked to the nurse, she didn’t have the orders yet, so she didn’t know what they were increasing it to, but she said it would probably go up 3 or 4 mL, putting him at 17 or 18 now!

The UPS man just came with Eli’s pack and play!

A better day!

Eli has been doing much better today! I talked to his nurse around 8:00 p.m. and he had only had 5 desats since midnight, as opposed to almost 20 the day before. He has not had to be “bagged”–when they put a mask on him and manually give him breaths–since the other night when he wasn’t doing well. Plus, his desats today were only down in the 80’s and high 70’s and anything over 85% is considered ok/good. The doctor’s even decided to bring the pressure on his CPAP down from a 9 to an 8.

Last night when he was weighed, he was at 3lb 1 1/2oz, and they upped his feedings to 11mL! He’s been tolerating them well and has started pooping regularly! My friend and I are going to visit him tomorrow, so I am looking forward to that, and later this week, Seth is taking a vacation day so we can stay in Columbus for two days!

Mommy’s birthday & a rough night for Eli

Yesterday was Mommy’s 21st birthday! My best friend, Kia, took me to see Eli (unfortunately Daddy had to work) and I got the best birthday present ever! I got to hold Eli for the first time! His nurse was changing the blanket underneath him and she asked me if I wanted to help. I got to hold him for about a minute inside the isolette. He seemed to really enjoy being held by his mother; he didn’t squirm or anything! I can’t wait to be able to hold him against me for the first time! I also got to see his cute little butt for the first time while he was getting his diaper changed!

I took my hand away and he reached for it

The best birthday present ever!

This morning, we received some glum news. Eli had a rough night last night and was having a lot of apneas (stopped breathing) and therefor a lot of desats. Eli’s white blood cell count has doubled so his nurse said that it is possible that he has a bug and antibiotics could easily clear it up and then he should be doing ok. He has only been on CPAP for a few days, so it’s also possible that he is not ready and will have to go back to the ventilator. Both scenarios are pretty common. His doctor has not made rounds yet, but once he has made a decision, Chuck is going to call me. I hope he doesn’t have to be put back on the breathing tube, but if that is what is best for him, then that is obviously what I want. The doctor who was on duty last night started him on antibiotics as a precaution. It takes 48 hours to get an official lab result, so at that point, if he doesn’t have an infection, the antibiotics will be stopped, and if not, it’s great that he’s already had several doses. His chest scans haven’t shown any changes in his lungs, so that is a good sign. As crazy as it sounds, I hope he is sick, because that can be easily treated and he should be doing better in no time. I’ll update the page when I know something!

*Eli is doing much better this morning than he did last night! He has only had 2 desats and they were during his care, which is not unusual for him. For now, he is going to stay on CPAP. They upped his caffeine dosage, increased his oxygen by 5%, and will continue antibiotics unless the lab results end up showing that he is not infected.

Making Mom & Dad proud

Today (again, technically yesterday), Seth and I went to see Eli with my Mom and sisters. As a result of poor planning, we arrived during non-visiting hours and killed time in the gift shop and food court. We got Eli an Ohio State teddy bear and a piggy bank for his room. It’s got red and gray polka-dots on it, and the Ohio State logo! These were the first items that we bought for Eli together!

When we went into the NICU at noon, Chuck and a couple of doctors who were still making their rounds and were standing around Eli. After a few minutes, they were finished talking, and Chuck gave us the rundown and said he was “pleasantly surprised” with Eli’s progress on CPAP! He also gave us his prediction that Eli would remain in the NICU until a little past his due date, which would be the first part of September.

Our visit with Eli went extremely well; the only problem is that it seemed to by so quickly. By the time we were on our way home, I was ready to head back! One of the highlights of the trip was hearing Eli make baby sounds (I wouldn’t call it crying!). It was great to see him without the breathing tube and to know that he was taking his own breaths. We are so proud of him!

Our time with Eli ended when a nurse had to readjust his PICC line and needed us to leave to ensure a sterile environment. It was around the time we had planned on heading home anyway, but it’s always difficult to leave. Once we got home, I called to see how Eli had “behaved” during the little procedure. Normally, Eli is pretty temperamental and gets fussy when his carepersons “mess” with him. We saw him get an echocardiogram while we were there (so cool to see his heart beating!) and he got so angry at the tech! He was pushing her away and hitting her! His oxygen usually gets turned up when he is about to “receive his care” and then turned down again afterwards. It turns out that Eli was very calm and had no desats while the nurse was repositioning his PICC line!

Besides Eli being longer, he is about the same size as his bear. We will see how that changes in a few weeks!

Feeling his chest move up and down–working those lungs!

Eli’s hat keeps his CPAP in place, and his chin strap keeps his mouth mostly closed, to prevent air from escaping.

Precious!

*I will probably add more photos tomorrow, once I get more printed/scanned! These are all from “Nana’s” camera, and are of Mommy with Eli. I’ll be sure to add some of Daddy!

Eli is on CPAP!

The good news from last night’s phone call is that Eli has put on a total of 4 oz since birth and now weighs an even 3 lbs! The bad news is that the nurse was not successful at putting in Eli’s PICC line. I felt so bad knowing that they tried for hours and didn’t get it in; poor little guy. Luckily, today the nurse got it into place on the first try.

The biggest news of the day is that Eli has moved from the ventilator to CPAP! The difference between the two is this: When on the ventilator, Eli has a breathing tube that delivers a certain number of breaths per minute. He was last set at 30 bpm, so even if he got too tired and stopped breathing, the machine made it so that he would at least be taking 30 breaths every minute. When on CPAP, the air is blown into his nose (a lot of you have probably seen this) through prongs. It doesn’t give him breaths, so he has to do it on his own. He is starting off at 75% oxygen, and if he ends up having to be brought up to 95, he will have to go back on the ventilator. His nurse told me not to be discouraged if he has to go back to the tube, that they are just trying this out, and it’s pretty common to have some setbacks. Hopefully all will go well; I know our little man is a fighter, but I’m nervous! I’m also extremely exciting and it is going to be great to see him tomorrow without the breathing tube! We’ll actually be able to hear him cry!

*EDIT 11p.m.* Eli has been on CPAP since about 5:30, and he is doing awesome! He was able to be weaned from 75% to 50% oxygen which is a huge improvement for one night! Also, the doctors like to see his oxygen saturation (sats) stay between 85-93% and Eli has been a 95%! I’m so happy and so proud of him!

No more breathing tube!

Godspeed, Little Man

My little sister found a song for me called “Godspeed (Sweet Dreams)” by the Dixie Chicks. It’s the most beautiful song, and I just can’t stop listening to it! It’s one thing to listen to a song about kids and appreciate the meaning of the words, but it’s not something that can be truly understood until you have your own. The chorus goes like this:
Godspeed little man
Sweet dreams little man
My love will fly to you each night on Angels’ wings
Godspeed, Sweet dreams
It really touches me, specifically, because I’m so far away from him when I am at home, but I’m still sending him all of my love and praying to God for Eli’s health to continue improving, asking for “Godspeed.”

Today I gave permission for Eli to have a PICC line inserted. PICC stand for peripherally inserted central catheter. It is an IV that goes into his arm or leg and goes directly to his heart. Chuck assured me that it sounds more complicated than it is, and the nurses who insert them have been doing it for years and usually do 2-3 babies a day. Once the PICC is inserted, an X-ray is done to insure proper placement and it can stay in for weeks without a high risk of infection. Right now, his IV is in his belly button, going through his umbilical cord, but those have a high risk of becoming infected after a week or so.

He had another echocardiogram today and it showed that the valve that needed to be closed was almost closed. He is going to get another dose of medicine to close it all the way and will have another scan done on Thursday to make sure all has gone well. Tomorrow he will have a brain scan done, so hopefully all will be ok still with his brain bleed. He is sill tolerating his feedings but will be receiving all of his nutrition through IV for a while, as the amount of milk isn’t enough to give him all of the nourishment he needs.

His blood-gas levels were low this morning, but he has been looking good ever since. He is still at 35% oxygen and they have been adjusting the ventilator setting to where he seems comfortable. Last week, the ventilator was giving him 50 breaths per minute. He has been brought as far down as 35 breaths per minute, meaning that he has to do more of the breathing on his own to keep his blood-gas levels up. He seems to do ok when it’s set at 40 breaths per minute, which is a good improvement from 50.

First feeding

Today Eli received his first breast milk. Before I was discharged from the hospital, I began pumping and the NICU stores my milk in a freezer and thaws it out for him. Everything I pump at home also gets frozen, and then I drop it off when I visit. Preemies are started out at very small amounts of milk. Their immature guts are unable to tolerate normal amounts of food, so their feedings increase gradually, and in the meantime, nutrition is administered through IV. Eli was started on feedings of 1 mL or 1 cc of my milk today. So far, he is not spitting it up, but he is not digesting it. He has had 3 feedings so far. I hope he is digesting by tomorrow (later today actually, as it is 1 a.m.). His nurse said that this is pretty normal, but if it goes on for much longer than 24 hours, the doctors might start to be concerned.

His oxygen level has stayed at a constant 35%, but they were able to bring the pressure down. His pressure was at 25% last night, and was brought down to 21%. The gas levels in his blood were checked, and his were a little low, although not a cause for major concern. One of the doctors decided not to risk him falling behind and had his pressure raised to 22% which is still an improvement!

Last night I was asking Eli’s nurse some questions that she couldn’t answer. She told me that she had never worked with a baby like Eli, that most babies whose mommies ruptured so early in pregnancy didn’t make it this far. Not that I didn’t know it before, but our little one truly is a miracle! We are so blessed! And to anyone who may be reading this who is in a similar situation, please don’t forget that miracles happen and don’t lose faith!

I ended up talking to Chuck, and I asked him if he thought Eli would be moving to CPAP soon (CPAP is the air support that he will graduate to once the ventilator is no longer needed). He didn’t really give me a straight answer, but he said that he would expect Eli to need a little more time since I was ruptured for so long. His lungs have developed past the point of 16 weeks, but aren’t as developed as a so-called normal 29-weeker. I was originally hoping that he would be on CPAP by the time he was a week old, but now I will be happy if he is on it by 2 weeks. He is making progress in small steps, so that is all I can ask for!

*EDIT* Eli hasn’t had any residual since 2 a.m. this morning, which means he is digesting his food!  His o-level is still 35% but the pressure has been brought down once again! His bili levels are back up to 8, but his nurse said that is a normal number for his age and weight. He now was only one lamp on him. I’d say this has been a pretty great day!

His first few days

The first time that we met Eli we talked to his neonatologist, Dr. Nankervis, who we were told we could call Chuck. Chuck gave little Eli’s lungs a grade of “fair.” He said they could have been a lot worse, but could have certainly been better. I felt this was a pretty big accomplishment, considering the worst-case-scenarios we were given by high-risk specialists. Chuck’s biggest concern was Eli’s blood pressure, which was low. They gave him a blood transfusion and some medicine, and his blood pressure has been great ever since. He also received one more transfusion when his hemoglobin was a little low.

He has had several scans done. His first brain scan revealed a tiny bleed. It is very common for preemies to have these, because their blood vessels are not ready to tolerate changes in blood pressure–in the womb, that stays pretty much constant. These bleeds can cause a number of neurological disorders, but Chuck said that as long as Eli’s bleed didn’t get any bigger, it probably wouldn’t affect him much. A scan done on the next day showed that it had not grown!

His first echocardiogram showed “nothing surprising for a baby his age.” There is a tube that goes to baby’s lungs for use in utero that, on a full-term baby, would normally be closed up. Eli’s was not closed and was going the wrong way. His second scan showed that it was going the right direction, which enabled his caretakers to administer medicine to close it up.

An abdominal scan showed slightly enlarged kidneys, but Chuck expects that to correct itself. Normally, the enlarged kidneys would indicate they were plugged up and not functioning, but Eli is “peeing like it’s his job!”

His urethra is positioned below the tip of his little weiner, so we will be referred to a urologist to make sure everything is ok with that. Surgery is available to correct it, and it is mostly a cosmetic issue, other than a higher risk of infection.

On day two, his blood was tested for bilirubin, the culprit for jaundice. His bili level was 11, which is considered pretty high for 2 days of age. Chuck said it could have been partially because of the blood transfusions. 3 sunlamps were placed on him, which allows the bilirubin to be excreted through urine. At his next testing, his level dropped significantly to 7.7. His levels stayed pretty constant after that, until this morning (day 4), when I was told he is at 5! I can’t wait until the lamps can be taken off of him, because he has to wear these glasses over his eyes, and I can’t see his face. Of course he is still cute!

Check out how blond his hair is!

He has been making small steps with his oxygen levels. I’m not sure what he originally started out at, but the highest one I know of is 70%. That means that the air going down his breathing tube is 70% oxygen, whereas the air we breathe is 21%. The levels are brought down a little at a time when it seems he will be able to tolerate a decrease. Sometimes he does, and sometimes he doesn’t. Sometimes, he does ok for a while, but then has to go back up. They started him on nitrous oxide (but not the same thing you get at the dentist!) which is supposed to help him distribute the air to the parts of his body and let his work his heart less. When I talk to Chuck tonight, I will ask him just how well this is working for Eli. I’m assuming it is going well, because his o-level last night when I spoke to his nurse was 40%!

He tends to get aggravated when tests are being administered or when it is too noisy around him, which is bad because he fights the ventilator and his oxygen saturation goes down. When he gets fussy, he is given a very tiny amount of morphine, which relaxes him. It is not given to him as a routine thing–only when it is necessary.

Today is the first day I have been away from my little boy, and it is really hard. I think about him constantly. Fortunately, the NICU is great about letting parents call whenever they want–last night I called at 1 a.m. Seth’s next day off is Wednesday, so we will probably go up then. My mom’s day off is Thursday, and Seth is still off, so we will probably ride up with her on that day. I would love to make it up sooner, if it is possible. I miss him so much! Next Saturday is my birthday, and you can bet I’ll be by his side on that day!