AMAZING!
July 29, 2008
That’s what our son is 
I’m so proud and so happy!
I was talking to his day-time nurse today about how a physical therapist was supposed to start seeing Eli soon to get him started on some exercises (with my help or a nurse’s of course) because his feet are kind of crooked-like. I can’t really explain it, but it’s a result of being squished in my belly without any fluid. It’s nothing severe. I was telling the nurse that I was expecting it because pediatricians warned me when I was pregnant that he might have some “deformities” due to not having room to grow because of low/no fluid. When she asked how long I was ruptured and I told her, she exclaimed, “3 months?! He’s amazing!” I guess she’s seen some kiddos with more serious issues!
And, for further proof that Eli is amazing, enjoy the following pictures (my cell and I were reunited today!):
Other than the big switch from CPAP to nasal cannula, there are a couple of updates. He had a follow-up eye exam today to check for ROP. Blood vessels are still immature; still no signs of developing ROP; another follow-up in another 2 weeks.
His doctors decided to start fortifying his milk today. Fortifying the milk gives it extra calories to help him gain weight. I was extremely concerned about this change, since we started seeing signs of NEC right around the same time his milk started getting fortified. I’ve heard other parents of NEC babies say the same thing. I thought he’d beeing doing pretty well with his weight, so I didn’t see the point in risking it. I talked to the resident about my concerns and she said they would watch him closely and that it would really help him. Sure enough, after his both of his first two feeds with the fortifier, he had 6-mL-residuals. I’m not sure if I was right about him not tolerating it, or if he was just having some trouble digesting as he was working really hard to poop for most of the day. For now, they have stopped adding the fortifier. And wouldn’t you know it, he went and lost 2 oz tonight; I guess I jinxed him! I’m really glad that his resident stuck to her word about being cautious though!
Quick like a cat
July 27, 2008
For the purposes of the following story, I need to explain how Eli gets fed. He has a feeding tube going down his throat and into his belly. The tube is taped to the corner of his mouth with a strip of tape that goes over his upper lip and it’s also taped to his cheek to keep it from hanging freely because he would yank on it if that were the case. At the top of the tube is a syringe that the milk is poured into, and it’s hung up on an IV pole so that it drains into Eli’s belly by gravity so he doesn’t get too much too fast. When I hold him, the syringe gets taped to the chair. Today, I was holding Eli in a wooden rocking chair and he made a very stinky poopy diaper. His next care wasn’t for 2 hours, and I didn’t want him to sit in that diaper for that long, so I stood up and put him in his crib to change him, but I left his feeding tube taped to the chair (I just moved the chair close to the bed so there was some slack). While I was changing him, his nurse came over and asked if I needed any help. I said no, but if there was a more comfortable chair around, I’d like to have it. She found me a “kangaroo chair” and went to replace the rocker with the recliner. She yanked on the light-weight rocker that was still attached, essentially, to Eli’s face. With my supermom powers, I grabbed the tube at lightning speed and stopped it from doing too much damage. I didn’t even realize what was happening until after Eli started crying. It ripped the little piece of tape from his cheek, but everything else was still in place. I wasn’t mad at the nurse, because it was a mistake anyone could have made, and I am sure she was very embarassed, and plus, she commended my quickness. I swear, becoming a Mom really changes you! I told Seth that becoming a Mom comes with the ability to do everything one-handed–hence my ability to express breastmilk with a hand pump while driving!
Other than a little crying, Eli had a fantastic day! He is up to 32 mL on his feeds and his IV got taken out! He had three good poops. His sats were great all day, except when he’s grunting, because he holds his breath. While I was kangarooing with him, he was at 23% oxygen and his sats were at 100% for almost the whole hour and a half. I gave him his bath tonight and he did phenominally well. The nurse and I had his CPAP mask off most of the time (keeping it a few inches from his face so he was still getting some air) and he only had one desat where he went down to about 74% saturation and he came up within a minute of having his mask back on. I’m getting very anxious for him to try nasal cannula! Again, the difference between the two is the CPAP gives him pressure. Since Eli wasn’t getting the pressure when the mask wasn’t up agains his face and still did fine, I feel he is ready for nasal cannula… not to mention: 23% oxygen and satting 100%!
He is still gaining weight, but last night something strange happened. Thursday night his weight was 4lb 4 oz, and then last night it was 4lb 8 oz! His nurse and I weighed him twice and both times showed this crazy weight gain. Tonight however, he was 4lb 5 oz. Technically that would mean he had lost weight, but since the night before was a fluke, I don’t count it against him. 
Big things are happening!
July 26, 2008
On Thursday, Eli got moved to a crib! He has been doing fabulous with his temperature, so there are no issues there! It’s so great to be able to put the side of his crib down and just pick him up! He’s staring to get a little fussy when it’s time to eat, but when Mommy picks him up and rocks him, he calms right down! I love it!
Speaking of eating, Eli is up to 27-mL-feedings. Tomorrow, he will be increased to “full feeds” and he will have is IV taken out. He has been pooping pretty regularly and hasn’t had any significant residuals.
In the next few days, he is going to try out nasal cannula, meaning he will no longer be on CPAP! Once he is off CPAP, he can start trying to eat from a bottle, and soon after that, we can try breast feeding! I can’t wait to feel like all of this pumping has paid off!
Thank you, everyone, for the prayers, comments, and gifts. Sorry for the brief update, but it’s late. I will try to post pictures soon. I forgot my cell phone at home (Yes, I am lost without it.) so I have no way of posting pictures. My Mom is going to send me a disc, and if I can get them uploaded to a RMH computer, I’ll post those.
Impressing the heck out of us
July 22, 2008
Eli has been doing very well lately, apart from some scary “spells.” They are scary to me, anyway, but the nurses have all told us they are nothing to worry about, that preemies sometimes go through these phases and he will grow out of them. About once a day, he has been dropping his heart rate (commonly called a “brady,” short for bradycardia) and at the same time having a pretty significant desat.
But there is a lot of great news! Let me start with something I learned the other day from RN Susan. His CPAP pressure is referred to as his “peep” by all of his nurses. I finally asked about it and I found out that peep is an acronym for positive end-expiratory pressure. “Regular” air has a peep of 5, and Eli is currently getting a peep of 6. As I’m sure you all probably know by now, “regular” air is made up of 21% oxygen and… drum roll please… Eli’s CPAP has been set at 21% for the last 8 hours! We are so excited about this! He has had a few minor desats, but has been doing well enough that his nurses have not had to bump his oxygen up at all. It would not be surprising at all if he did end up having to go up, as it’s not uncommon for preemies to go up and down on their oxygen percentage for a while before becoming able to stay at a constant low percentage, but he is still getting very close to coming off CPAP!
Also, he is still getting 8 mL of milk every 3 hours, but he has had no, or next-to-no residual all day! I am guessing the doctors will increase his feeds tomorrow to 11 or 12 mL. They probably would have today, but Eli’s been trying hard to poop for a few days with no success, so they wanted to give him a little time to get things moving first. He received a glycerine suppository to help him poop, and it worked! Hopefully he can stay pretty regular from here on out.
He gained 10 grams since last night’s weighing and is now just shy of 4lb 2oz. After the big poop today, I would have expected him to lose a tad, but he didn’t! Assuming he doesn’t dip below 4lb again, he is big enough to be moved from an isolette to a CRIB! He is already being prepared for the move. His isolette has been set on air mode as opposed to skin mode. When he was smaller, the isolette heated up and cooled down in response to his temperature as read by a probe stuck on his belly. Now, the isolette is set to a specific temperature, slightly warmer than room temperature, and he is wearing clothes and/or being swaddled in a blanket, just like he will be when he is in a crib.
It’s hard being away from him (especially under the circumstances, as I am home for Josh’s funeral) but it’s a huge relief to know that he’s doing well. Please keep him in your prayers, as well as Josh’s family and friends.
On a bit of a side note, Jacob Fonseca went home with his parents today! Yay for Jacob and his family!
It’s a GO!
July 18, 2008
Here are some pictures that I wanted to post the other day but couldn’t.
Great news! Eli’s test today showed that he has a normal, healthy colon! They started feeding him again today at 6:00 p.m. right where he left off–4 mL. He most likely just needs more time. Also, being on CPAP can make it hard for him to digest his food because he can get a lot of air in his tummy.
Speaking of CPAP, at rounds this morning, the doctors decided to lower his CPAP pressure from 8 to 6. He is one step closer to breathing room air. The oxygen level is about the same as it was with a pressure of 8; It is set at 25% and he has been keeping his sats up in the mid-nineties! When he gets down to 21% and continues to do well, there is a good chance that he will be ready to be taken off CPAP.
A blood test showed his hemoglobin (red blood cells) was low, so he had a blood transfusion. You might remember from his last one that we use red blood cells to transport oxygen throughout our bodies. Hemoglobin is made in our long bones, and preemies have smaller-than-usual long bones. I absolutely knew he needed one. I don’t know if it is a mother’s intuition or what, but I could tell something was, for lack of a better word, wrong. Over the last few days, he hadn’t been keeping his sats quite as high as usual, and he had seemed more sleepy/less alert. I also thought he was looking a little pale. I am grateful for the transfusion, because it will help him keep his oxygen saturation up and feel more like himself, but I’m a tad concerned. I was told before that if he received too many transfusions that it would send his body the message that it didn’t have to produce any more hemoglobin by itself. His nurse today said it would probably just take him longer.
I meant to type this in my last post, but the internet was acting up. Eli had an eye exam the other day. The doctor was checking for something called retinopathy of prematurity or ROP. It is a condition involving immature blood vessels that can result in vision problems or even blindness. If it is caught early, there is treatment available. The exam involved the doctor holding Eli’s lids open, shining a bright light at him, and using an instrument to move his eyeballs. Needless to say, Eli didn’t want any part of it! The doctor explained to us that his blood vessels were still immature, but that was expected. He is showing no signs of ROP, but will still need a follow-up exam since it has a chance of developing until those blood vessels mature.
I also have some sad and very unfortunate news. Seth’s cousin, Josh, passed away today. He went into cardiac arrest. It was very unexpected, which makes it all the more devastating. I don’t think anyone could disagree with me when I say that Josh was one of the sweetest guys I’ve ever met. He was always asking about Eli, and about me when I was in the hospital. I’m very sad that he never got to meet our son. Josh will surely be very missed.
You know what they say…
July 18, 2008
Babies in the NICU tend to take two steps forward, one step back. I am finding this to be very true. I have some good stuff and some not so good stuff to report today.
Yesterday was a big day for Eli, and also for Mommy and Daddy. We got to put his first outfit on him! He weighed 1704 grams, which is 3lb 12 oz–one pound over his birth weight! Seth and I dressed him together, and it was a great, sweet moment. He is wearing a size “preemie,” which is supposed to be good for babies “up to 5 lb.” I don’t know who decided it would fit a baby under 5 lb, but I’m thinking they were wrong. By the time Eli is 5 lb, this outfit will just be starting to fit! Oh well, he looks adorable anyway.
Also, Eli had his first REAL poop last night. Trust me, it was a big one. This is good news! I thought maybe once he started pooping that it would get things moving and he would start digesting things better. I guess I was wrong. One of the doctors talked to me today (I’m not going to lie, I didn’t understand much of what she said because of her accent) and she either said that they were going to stop feeding him for the time being or they were not going to increase his feeds for the time being, because he was having so many residuals. They don’t like to move forward if the baby is digesting less than 50% of his food, and Eli has been only digesting about 25% a lot of the time. I know of at least once today that his residual was a little bit green tinged, which, if you remember from the bile that was coming out of belly before, is not good. Tomorrow he is going to get what is called a barium enema. It is exactly what it sounds like. He will get a suppository of barium which will allow the doctors to see on a scan how things are moving through his digestive tract. Pray that everything looks good. If it does, they will most likely conclude that he just needs some more time to get used to his feeds, or, they might decide to do another test where they put the barium in his belly and then let it go through his upper GI tract.
He’s getting big!
July 16, 2008
First I would like to say to the Stimperts: thank you so much for the card and of course for all of the prayers! It was a nice suprise at his bedside today If anyone else would like to send a card to Eli at the hospital, click here. Note that the hospital has him listed by my last name, not Seth’s.
Eli is now up to 4 mL feeds. He is still having residual after some feeds and completely digesting at other feeds. They continue to watch him closely by keeping track of the residuals, making sure his tummy stays soft, and measuring his girth (how big around his belly is) to make sure it remains stable. Yesterday he had a little bit of a poop, and there was no blood!
His weight tonight was 3lb 10oz! I can’t believe how big he is getting. He is getting very close to the weight requirement for being able to wear clothes. He needs to be 1700 grams and he is currently 1660 grams. Tomorrow, Seth and I are going to go to Babies ‘R’ Us to pick out the first outfit he will ever wear!
Here are some pictures that Seth and I snapped with my cell phone tonight:
When she was putting him back to bed, Eli’s nurse took his mask of for a moment. Isn’t it great to see his whole face? I can tell he is starting to fill out!
Ok so far…
July 13, 2008
Eli had his first feeding today at 3:00 p.m. For the whole first 24 hours, he is only getting 2 mL of breastmilk (or 2 CC’s) every 3 hours, just to make sure he is going to tolerate them. He did well with his 3:00 feeding, so he was given another at 6:00. At 9, he still had 1.5 mL left in his belly that he did not digest from his 6:00 feeding. The attending neonatologist on duty, Dr. Mandy, decided to re-feed him what had been left in his belly and skip his 9:00 feeding. At 12:00 a.m. he did not have any residual (undigested milk in his belly) and his belly was nice and soft, so they went ahead with that feeding. Hopefully it will be smooth sailing from here!
Tonight was bath night and Eli did great the whole time. He kept his sats and temperature up the whole time, even when we had his mask off for a while while I was washing his hair. He also cried much less, just got a little whiny when I pulled off the tape holding his temperature probe on, understandably! I was really impressed! (And might I add that his nurse was impressed with my bath-giving skills )
Thank you to all of you who are praying!
Feeds start tomorrow
July 12, 2008
Today was kind of a crazy day. He started out great, keeping his sats up at 25% oxygen–very close to room air. Even when Aunt Bri and I held him, he did well; he kept his sats and temperature stable. Then later tonight, I was kangarooing with him and he had 3 big desats, one time, his saturation when clear down to 47%. I was freaking out. I think the real problem was that his CPAP mask needed adjusted, because every time it happened, I flipped him on his back, messed with his mask, and he went right back up to 100%. Still scary though. After he went back to his isolette and got settled in, his sats stayed up, and he acted like he didn’t want me to leave. He wouldn’t let get of my fingers. I held his binky (it’s hard for him to keep it in his mouth because of the CPAP, his feeding tube, and he’s also just not that great at sucking on it yet) in place for him for a while and finally he fell asleep. I hope he has a good night.
His nurse tonight really upset me. I went to the hospital early enough to pump specifically so I could help with his 8:00 care. I was finishing up in the pumping room and asked Bri to tell his nurse that I wanted to change his diaper, swab his mouth and wipe his eyes. Those are all the parts of his care that I am able to do. Also, at 8:00 every night, he gets his weight and the nurses usually ask me if I want to help with that (I hold him while they zero the scale, which is built into his bed). His nurse went ahead and swabbed his mouth without saying anything about it, and then started changing his diaper. When I asked if she minded if I did it, she said “oh, I’m just going to do it really quick so I can hurry up and get him weighed.” I really should have said “well you know what lady, I don’t get to do that many!” Then she got him weighed and he was 1558 grams–quite a jump from last night’s 1476 grams. I’m not sure if it was accurate, but if it was, Eli is almost 3 lb 7 oz! WOW!
Today was Eli’s last day of antibiotics, so tomorrow he will be starting feeds again. His tube is already in place. He hasn’t been pushing much up out of it, but the little bit that has been coming up has been the normal clear/white color! Please pray that his intestines are healed and he will tolerate feedings and start pooping again (he hasn’t pooped since he stopped feeds) with no blood!
A step closer to eating again
July 8, 2008
Since the threat of NEC was first presented, Eli has had an OG tube sucking out his bile and belly juices. Today, Dr. Jadcherla decided to have the suctioning turned off. If Eli’s tummy can handle passing his own secretions, they will start feeding him again soon. Again, he will start off very slowly.
Here are some highlights from the past few days!
This one is my new fave! Daddy is holding him for the first time.
Another of Daddy’s first time holding him
His mouth gets very bubbly!
Kisses from Daddy!
Wrapped up in his “snuggle” as RN Susan calls it.
Daddy and Eli… snoozin’!
With Grandma Jody
A very happy Mommy & Daddy, at our little man’s bedside!
Rita, Grandpa Smith, and Aunt Brianna checking out our little cutie pie
And here is a link to my first time giving him a sponge bath:
| http://www.youtube.com/watch?v=saGmUWxjgaY |
