Update

Annie weighs 4 lb 3 oz tonight. Today Annie had a really tough day, which is very scary and emotional for us! She had two grade 4 episodes today--that's where she just completely stops breathing and needs to be bagged with O2. After talking to the doctor we decided to have an ENT specialist come and examine her to check for possible problems there. They didn't find anything, but will be in tomorrow early to do a test on her throat and vocal chords using a scope camera to look for possible problems there. If there are no problems here this will rule out ENT issues that may or may not be contributing to her breathing problems. So, we'll see what happens with that. If she has more serious episodes they will do some more testing for possible infection development--they say there could be some sort of infection developing which could possibly be contributing to the issues. So, again we wait. It seems we are waiting for everything in our life right now and it's not easy. It hurts not having answers and not being able to be in control of outcomes! Earlier this afternoon when Nicki was at the bedside Annie's temperature was down, but it came back up after a bit. So, she's learning how to regulate temp as well right now. It's an ongoing process and we trust that God is traveling with us through this journey. Peace out--

Update plus some token pics of our other kids

The Flag Football--Piano Player!

At the Hill AFB water park
Enjoying a snack in our backyard
Big brother taking care of litte sister

The three girls hangin' out on the roof of the van....

One of our esteemed blog followers mentioned she has forgotten what our other kids look like so I've posted a few of their pictures here. Hope this helps jog your memory of what they look like :).

Here's the update:

Tonight I am proud to announce some good news--Annie has broken the 4 lb limit and weighs in at 4 lb 1 oz. It's pretty neat to think that she has almost doubled in size. Tonight I got to snuggle with her for a bit while she began her feeding. Unfortunately that didn't last long because she forgot to breath again. It was a bummer to have to put her back down, but I was happy to help get her situated to breath better while eating. I'm starting to think that maybe if the food didn't taste so good she might not forget to breath; focus less on the good food and more on the O2! Maybe Nicki could start eating more lima beans.... Anyway, the other big news today was that they decided to put her back in the isolette and can the crib idea for a few more days. She has a one-sie on though in preparation for further crib experiences, but for now she is back in the comfort, peace and protection of the isolette. This is good. Both Nicki and I felt like she was having to do too much by being in the crib and trying to regulate temp while trying to breath and eat etc. So, time will do its business and Annie will hopefully grow out of these breathing problems. We pray it may be so.

Another Update

Here's a great shot of Annie tonight just before getting her diaper changed.

Same time, different angle--eyes WIDE open!!!

This is what happens after somebody gets a mind of her own and gains a few more pounds! We love our other baby girl Ruby too!

Well, Annie graduated today to a crib. Nicki and I were actually extremely surprised that this happened so soon, and we actually still have our reservations about it. Last night I was told she was making baby (no pun intended) steps toward getting in the crib, and we find out today all of the sudden she's in the crib! It seems like it was all pretty overwhelming for her too, because tonight while I was there I attempted to hold her and she stopped breathing several times. That was very scary for me. It seems like she struggles the most when she has to try and do multiple things all at the same time--and with a low hematacrit: she has to digest food, breath, now maintain temperature, take in new sound stimuli (now that she's out of the isolette) etc. That's a lot to do for a kid who has already been struggling to breath, has a PDA and a low crit. Anyway, if things go poorly tonight I think we will ask the docs about slowing things down a bit. She is gaining good weight--tonight she weighed 1600 grams or 3 lb 15 oz--just shy of 4 lb. I got some great pics of her tonight and will put those on the blog, so check that out. We continue to pray that Annie will grow out of these desaturations and A's and B's! She sure is a beautiful girl--as you can tell from the pics--and has an out of this world spirit. We love her if you can't tell.

Sweet Little Peanut

Showing off her best side!:)
Her cherub pose!
Here's our sweet little baby smacking her lips on September 25th. She's almost 34 weeks gestation, or 6 weeks old. She's growing and growing but still having a hard time remembering to breathe. . . There are just so many things for a little one to remember. Her hematocrit is still at 23 so they will be testing it again on Wednesday. We are praying for her little marrow to start producing red blood cells on its own so she won't have to get a blood transfusion. She's still on the high flow oxygen which seems to give her a little more stimulation but only at anywhere from 21 to 24 % which is near room oxygen levels. The doctors stopped the reflux medicine last night because they couldn't see that it was making any difference for her and has some negative side effects. We are seeing "Practicing Medicine" at it's finest:). I've been able to hold her for several hours every day and even to start feeding her. All I can say is thank heaven for the tube in her tummy or she wouldn't be getting anything. We'll work on that one for the next several weeks.

update

Hi everyone! Annie is doing very well as of tonight. She is weighing in now at 3 lb 14 oz. Overall she has had less A's and B's and desaturations than in recent times. That is a great thing! The docs keep moving the O2 levels back and forth to test Annie with what she will do and how she will respond. So, right now she is on 2 Liters of O2 at just around 21-23%. Today Nicki got to hold her skin on skin for a while and she did great during that time. She's still on the reflux meds and that seems to also be positive. Overall we are happy with how Annie is doing. She is growing more hair and continues to sport her hairy back cowlick (Sophie had this too!). Good night

Tuesday

Annie gained another couple oz since yesterday and weighs almost 3 lb 12 oz. The biggest thing that happened today is that the docs all pow-wowed and discussed Annie's persistent desaturations and they determined they would start her on some anti-reflux medication. The hope is that clearing away some of the reflux they will free her airway and thus reduce the desats and A's and B's. The are some side effects from the meds but they are minimal at this point. They also feel that the PDA is actually shutting on its own...just EXTREMELY slowly. Also, they don't think the PDA is the primary cause of her breathing problems. So, they're trying to figure it out by reducing the reflux and seeing what happens. Other than that, Annie is doing great!

Monday's update

Tonight Annie is weighing in at 3 lb 10 oz! She is gaining some good weight and we are very happy about that. Annie's biggest puzzler she's dishing out right now is her breathing. We just can't figure out why she is having so many desaturations and heart rate drops (A's and B's). This is perplexing for us and for the staff. On one hand they say she is doing great, and on the other hand they say she is having more of these breathing episodes than is normal. So, we are left to sort of wait it out to see what will happen. One theory is that the post-feeding reflux is causing the severe desaturations. This would make some sense because most of the desats and A's and B's happen after feedings. There's also the ever-present PDA that has still not closed. The doctors feel pretty certain these events are not only from the PDA though. She does not have an infection, so that is ruled out. They have discontinued her caffein dosage to see if that would make any sort of difference as well and it doesn't seem to have done much. There is also the fact that little Annie is just still little, and with time this ideally will work itself out. There is medication of course for the PDA, and there is medication to stop the reflux. But, there are possible adverse effects to both of those approaches as well. The thought right now is that less is better, and waiting for the body's natural process to unfold is still the best bet. To assist with her breathing issues they have upped her O2 to 2 Liters at 23-25%, which is really not that big of a change from the 1.5 L she was at. So, that's where we're at. She is beautiful, you should all know that! Nicki got to spend some good time holding her today and I got to touch her this evening--that's always nice. More later!

Four Weeks

Today Annie struggled quite a bit with desaturations and heart rate drops--it was actually pretty scary to us! Nicki and I got to go together to see Annie today--as I said yesterday to introduce her to breast feeding, but because she was struggling so much we couldn't do that. We did both get to hold her for a period of time and that was nice. Some of the struggle could have been because she had an eye exam today. This exam was a standard check to see if her eyes are developing properly, and they are at this point. The nurse was explaining that sometimes the stress of the eye exam can lead it increased desaturations etc. So, maybe that's the reason. Annie had another echo test done today to check the PDA size and it still looks about the same it did two weeks ago. So, it's not shutting, but it's also not opening any wider. Still no plans from the docs to try and medicinally close it. Several other tests were conducted to check for viruses or bacteria that may be causing a possible infection, but all tests came back showing normal results. So, for now, Annie does not have any infection. Her lungs look clear as well. Her hematocrit is down a tiny bit more and so blood transfusion is in the discussions with the docs--still no decision there though yet. Today they moved Annie to an official isolette. Apparently the bed she'd been in up until now has been an isolette 2, or giraffe. So, now she's in a "new ride". It's basically the same, just different. Got it? It's just a bit bigger and does not pump out humidity like the other one did. She's growing up and she's four weeks today! That's all for now.

NIght before a Month Old

Tomorrow Annie will be one month old (she's 32 adjusted weeks today)! Here's the latest:

Annie is at 21% with 1 Liter of O2--this is room air basically with high flow O2. She still desaturates some but it's looking good. On her weight she went up 10 grams, which is not substantial enough to change things from the 3 lb 3 oz she was before--it is a gain though and that's good! Today the doctors decided it would be good to introduce Annie tomorrow to the idea of breast feeding, so that adventure will begin tomorrow with the occupational therapist. We will also get to hold her tomorrow while they change out Annie's isolette (they do that every two weeks). Other big news: the tests they ran to check for infection came back negative, so we know now definitively that Annie does not have an infection. That's great to hear! We are all wondering when/if the PDA valve is going to close and it was still loud and clear tonight--so no change there unfortunately. Things are looking great! BTW, this other picture is not Annie, as you can see. This is Ruby doing what she loves most right now--trying on mom's shoes!

New News

The latest and greatest: Annie weighs 3 lb 3oz and has now moved rooms into the area where babies go that are doing a bit better. That's good news! She was struggling a bit--as I said before--on the low flow 1/2 liter O2 so they now have her on high flow 1.5 liter O2 and she seems to be doing very well on that. She has still had some desats and heart rate drops, but is doing better than before. The heart murmur is still there, unfortunately, and they don't yet feel a need to do an echo. We thought they were going to, but they decided against it for various reasons. Her hematocrit is still low and they'll check it again tomorrow. The nurse tonight said everything that's happening to Annie is normal for premies--the O2, the hematocrit, the PDA etc. Annie's platelet count is also up, so there is some mild concern that could indicate an infection, but all her vital signs show normal. We are praying she won't get any sort of infection. This picture that you see here is the position Annie likes to be in during her feedings because it helps her remember to breath well. She's getting pretty strong and even scoots up on her knees a bit when she's on her stomach like this. Is that a sign of things to come? Will she crawl before nearly age one--unlike any of our other kids? We shall see, and I'll keep you posted if she does crawl while in the isolette.

Update

Update on her: Annie is still having some desats so they had to up her O2 back to the 1 Liter. They did another test to see if Annie's heart is working harder than it should and the results were normal. Tomorrow they'll do another echo test to check the progress of the heart valve shutting. They think that the breathing issues are really linked to that. We'll let you know what the results are. Here are some of Annie's stats from tonight: She is going to move to 1 Liter of high flow (more humidity) to see if that will improve things and move away from the desats; her hematocrit was low--27--right on the edge of needing a transfusion, they want to see if she will start making a lot more of the red blood cells; She likes to move around a lot as well; her current weight is 3 lb 3oz and her length is almost 16-3/8, her head is 10-7/8.

10:30pm again

Another day, come and gone and here it is 10:30pm again. Whew. Annie's doing MARVELOUS. Tonight she weighs...drum roll...3 lb! Cool landmark to reach. She is doing great on the reduced O2 of 1/2 liter flow at about 24%--which is very close to room air composition. She continues to gobble up her food and it looks like the food is making its way to the necessary places (hence the weight gain) and working it's way out properly. We are so happy she is doing so well and is healthy. It is really just a waiting game now as we watch her grow. Thanks for all your love and support!

Here's a 3-week birthday photo of Annie.

3 Weeks Old!

Annie gained 10 grams but still weighs on the upper end of 2 lb 15 oz. She is doing great on 1 liter of O2 at this point and has several periods of complete wakefulness where she just sort of looks around and soaks in her environment. Tonight I got to hold Annie and look at her for a while. What a spirit she has! She is growing some jowls now, so that is fun to see. Today Annie is three weeks old officially, so happy birthday to her. Things are going as well as they possibly can right now. The doctors have talked about maybe tomorrow taking her down to 1/2 liter O2 and see how she manages that. Her feedings are still what they have been and she is handling those very well. She doesn't much care for the feeding tube though--or the nasal canula for that matter--and she is constantly grabbing at those with her hands. On several occasions she tears them out. Tonight as I sat and looked at her I felt a sad feeling of how I'm missing a lot of her first weeks of life, the typical development a baby goes through during its earliest days. That's sad to me! On the other hand, we cannot take care of her at home right now and she's in the right place.

Update

The latest today is as follows:

Annie weighs 2 lb 14 oz and is currently sleeping very peacefully. That's good! Her belly looks wonderful and she had a large stool tonight around 8pm. Recently they upped her O2 to 2 Liters and that has helped reduce her desaturations considerably. She has some fluid in the lungs but after some tests the doctors determined they are not worried about possible pneumonia because the white blood cell count is normal. Test results also came back on the heart (BNP test) and they found her heart to be normal size, so they have--for now--ruled out the unclosed PDA valve as the reason behind the breathing issues. They feel it is probably just the prematurity that is leading to the O2 issues--the bottoms of the lungs don't expand completely when babies are so little. This is why they upped the O2 to 2 Liters and that seems to really be doing the trick. Feeding-wise, they have her on 24 calorie fortified breast milk and today they started a multivitamin with iron to help her red blood cell count (her hematocrit is downs a bit). That's all for now!