Friday, July 31, 2009
This morning, Annaleigh and Lily were both having episodes. Their monitors were ringing back and forth as we were visiting. But then something amazing happened: their nurses got rocking chairs for us and pulled both girls out of their isolettes and plopped them down in our arms. And almost immediately, both girls settled down. We held Annaleigh for an hour and Lily for about 40 minutes, and after we put them back in their beds they both proceeded to have great days. It was as though the only medicine they needed was their mommy and daddy! What a great feeling!
When we returned for our evening visit, we got to hold the girls a second time, and Charlie came out for a snuggle with mommy too. Five baby cuddles in one day! What a fantastic day!
As far as their health is concerned, things are pretty much the same. Everyone is eating and growing (Annaleigh hit 1000 grams today-- we now have two kilo babies!), and they seem to be on track for where they need to be. Dr. Hiatt saw how upset we were before holding them this morning and assured us that things were going well and “the most dangerous part of their lives is behind them.” That was nice to hear.
Tomorrow has the potential to be a good day too. Lily’s nurse, a young girl we haven’t met very often, thinks that Lily is ready for some kangaroo cuddling! (I had no clue what that meant until very recently. Basically, it’s skin to skin contact. Brooke will take off her shirt and Lily will take off her blankets, and the nurse will lay Lily down on Brooke’s chest. The bare flesh contact is supposed to be great for the baby, but I have a feeling that it’s going to be great for us too.) So let’s just hope that there are no surprises between now and then so we can have some fun tomorrow.
Annaleigh could not have looked more comfortable during her evening cuddle with me. She slept soundly, kept her numbers steady, and gently chewed (gummed?) her feeding tube.
Lily... well, Lily is just fun to watch. She had just gone back into her isolette after a good long cuddle and she decided that it was time to stretch out. And she stayed like this until we left to go see Charlie. She's such a ham!
Charlie and Brooke in the fifth and final cuddle of the night.
We arrived at the NICU and found (for the second time) mail waiting for us. This time, a former student of mine and her mom sent us the most beautiful personalized baby blankets. When Brooke opened the box, she hadn't even taken them out when she giddily yelled, "oh my god I love them!" So thanks Jess Katz and Mrs. Katz. We really love the blankets (and the notes) and we appreciate the support. Are we lucky, or what???
Thursday, July 30, 2009
It remains to be seen as to whether he can handle BiPAP for any extended period of time. He had a lot of episodes when it first happened but has calmed a bit since. They'll continue giving him the steroids to help his lungs in the meantime.
The girls are both doing okay, though both were having issues this evening, Annaleigh especially. She didn't seem too comfortable and had more episodes than normal, but her numbers all looked good and she's been digesting her 4 ml of breast milk. Lily seems to be breathing and eating okay but she's lost a good bit of weight in the last 24 hours (from 960 grams yesterday to 931 grams today). There's a lot of different reasons a baby would lose that amount of weight so we're trying not to get too bothered by it. Hopefully it was just an anomaly and she'll add some more bulk tomorrow.
The highlight of the day came early. During our morning visit, Brooke got to hold Lily and I got to hold Annaleigh-- at the same time! Since their isolettes are next to each other, we got to put two rocking chairs between their beds so the chairs were next to each other. It was the closest the girls have gotten to each other since birth, and it's as close as we will get to all being together while they're in the NICU, since Charlie will be in isolation for the duration and he won't be allowed out to visit his sisters at all.
It was a good day but a little unnerving with Charlie's drama and Annaleigh's dsats. Both could (and hopefully will) turn out to be nothing major. Only tomorrow will tell!
Lily wanted to check out her mommy. Look at those eyes!!!
Lily is just so beautiful. Honestly, I could look at her eyes all day.
Annaleigh decided that today was a good day to start foaming at the mouth, which led to numerous "don't let her bite you!" jokes all day. Apparently it's funny to make jokes about your child having rabies. Who knew?
Wednesday, July 29, 2009
Charlie is doing well with his feedings and steroids and he may be off the respirator in another week. Annaleigh ate for the first time in nearly two weeks and is tolerating it perfectly so far. Granted, she’s only eating 2 ml of breast milk, but at least it’s a good sign. Lily has been on BiPAP for 24 hours now and all signs point towards success. She hasn’t had many episodes and doesn’t seem uncomfortable. Needless to say, we’re happy about all of this.
Other than that, there’s nothing to report. If we can keep every day’s post to this short length for a while, it’ll mean that everyone is growing according to schedule and there aren’t any problems. It’s not exciting, but we definitely want dull and boring in our daily reports!
Charlie looking up at his nurse Sue as she moves him back into his isolette after weighing him.
It is extremely difficult to move any of the babies, but Charlie is particularly challenging. The nurse has to be very careful about keeping his respirator tube still while transporting him from his isolette to the scale. If the respirator moves, even just a little bit, it can hit his vagel nerve in his throat, which causes his heart rate to drop and his breathing to slow. Luckily, the girls aren't as sensitive as Charlie.
Charlie is exhausted after his bath.
Lily is very happy to be held by her mommy. All of her breathing numbers improved dramatically when Brooke had her snug in her arms. She wasn't quite as content when I held her.
Lily Bug loves to play with her hands. The whole time we were holding her, she kept her hands on her face, examining her mouth and her nose and her BiPAP tube. She was so silly that Brooke laughed hysterically (she actually laughed so hard that she cried, which is usually something reserved for animal humor).
The thing about the CPAP is that it looks so much worse than it is. Annaleigh is sleeping soundly. Notice the chin strap; they have to put it on her because she leaves her mouth open so much that she loses all her oxygen! The chin strap helps remind her to close it every now and again. I have a feeling that she and her sister and going to keep their mouths open all the time (just like their mommy) and talk, talk, talk once they get out of the NICU.
Annaleigh on CPAP!
Lily on BiPAP!
Charlie… is cute!
Annaleigh has recovered so well from her surgery that she skipped BiPAP and went directly back to CPAP. Basically, she’s breathing on her own and just getting her oxygen put directly into her nose. Lily’s steroid treatments finished and she was put on BiPAP. Unlike last time, she’s managing well so far. Her numbers are good and she’s not having too many episodes. This is a huge step for both girls!
Charlie is doing well but he’s not ready for any respiratory reduction just yet. He breath rates are down from 46 yesterday to 40 today (that’s the number of times the respirator forces a breath into his lungs), but his pressure is up from 15 to 16 (that’s the amount of pressure the respirator needs to inflate his lungs). They’ve started him on a similar course of steroids to the one Lily was on and they’re hoping that he builds some lung strength over the next week. The other change is that they’ve been feeding him slowly with a machine that stretches the feeding time out over an hour rather than the couple minutes he’s been used to. The hope is that by spreading out the feedings he’ll be able to tolerate the fortifier better so he can get the extra calories and gain some weight.
The only other news of the day is the weights. Annaleigh has surpassed Lily again and is now five grams heavier (960 grams to 955 grams). Lily is eating and getting the fortifier so I have a feeling that she will add weight faster. The plan is to start Annaleigh’s feedings maybe as soon as tomorrow. Regardless, Charlie remains the biggest—he’s the Chunk!
The only drawback to Annaleigh being put on CPAP is that we don't get to see her pretty face as much. We've really gotten to see how beautiful she is over the last few days, so we're hoping that she doesn't need the CPAP for too long.
Lily is much happier on her stomach, but she can't be on her stomach too much with the BiPAP tubes in her nose, so she's hasn't settled down much. She keeps her hands up in front of her face or on her head; everything seems so dramatic to The Bug!
Monday, July 27, 2009
Everyone is doing well today. Annaleigh seems to be feeling much, much better after her surgery. She is no longer on pain medication and is looking happy and perky. The tube in her nose, which was draining the bile from her stomach, has been removed as there is no longer anything that needs to be drained. She has also pooped several times today, which is a good sign that her GI track is functioning properly. The surgeon said that she should be ready to start feedings again very soon, and hopefully this time she will tolerate them with no trouble at all. She had a big jump in weight last night to 940 grams, although the nurse warned us that a lot of it could be attributed to post-surgery fluid retention. We’ll have a better idea of her true weight in a few days. This morning Joe managed to finally get a great picture of Annaleigh without a ton of tubes hiding her gorgeous face. She is even more adorable than I thought she was!
Lily is a star today! She finished up her steroid treatment and she will be rewarded tomorrow by having the ventilator removed and going on CPAP. Well, Miss Lily Bug might not think of it as a reward, but it is excellent progress for her. She was weighing in tonight at 985 grams and tolerating her feedings and the fortifier beautifully.
Charlie is the only slight cause for concern today. He’s still relying heavily on the ventilator, which they are attributing mainly to his prematurity. Dr. Hiatt said that they will most likely give him the same course of steroid treatment they gave to Lily in hopes of strengthening him. He is no longer showing any symptons from the MRSA and he is finished his antibiotics. He is still enjoying his feedings and they were finally able to add some of the fortifyer, in a lesser amount this time, and so far he's been albe to tolerate it. His weight tonight was 1050 grams, up only 30 grams in the last four days, but given the fact that he peed a ton thanks the lasix it makes sense that he stayed the same.
So all in, all another stable day for the babies – thank goodness! We are hoping for many, many more like this, although we are of course still bracing for the bumps that are sure to pop up again. But for now we are happy to celebrate our beautiful babies, their one month on earth and the joy they have brought us in that short amount of time.
We also need to take the time to thank our mystery friend in Dayton, Ohio. This afternoon we received in the mail a generous Visa gift card. It was accompanied by a nice note, but no signature and no return address – just an Ohio postmark. So whoever you are, thank you so, so much! I know we keep saying this, but we are still constantly overwhelmed by all the kindness and support everyone, even people we have never met, have been showing us through all of this. We are very, very lucky.
Sunday, July 26, 2009
Annaleigh is recovering wonderfully from her surgery. Last night they were able to move her back into her isolotte, and she is thrilled to have her quiet little home back. This morning when Joe was there Annaleigh was wiggling all about and smiling at her daddy. She seems to be feeling much better! The puffiness in her face from the anesthesia has gone away and she is her gorgeous self again.
Charlie was also full of it during Joe’s visit! Joe got to change his diaper and while doing so Charlie both peed AND pooped on his daddy! Luckily Joe found it hysterical and rewarded Charlie for his mischief with a nice snuggle outside the isolette. Charlie still has the hazy spots in his lungs, which the doctors believe to be fluid, showing up on his chest x-ray, but he received the lasix diuretic last night which has been helping with that. He is still eating his 18 ccs of breast milk and the doctors are looking for an alternative to the fortifier to give him, since he just doesn’t seem to like the one he’s been getting at all.
For once, Miss Lily Bug is being our strongest baby! Her ventilator settings are extremely low and she is hardly having any episodes. The doctors have attributed her “bad” behavior to some swelling in her throat. They are giving her a 48-hour course of steroid shots to get rid of the swelling, after which they plan to take her off the ventilator and put her on CPAP. Hopefully this time she will thrive. We know she can do it! Lily is also eating like a champ. Determined to catch up to her brother, Lily is now eating 16 ccs of breast milk at each feeding. The doctors began giving her the fortifier today as well and so far she is tolerating it beautifully.
So I may be down for the count, but the babies had a good day. Go, little ones! Mommy misses you more than words can say but she is so proud of you all!
I really was surprised! Note the water bottled and notepad in my hands - I really thought I was going into that conference room to work.
Saturday, July 25, 2009
Annaleigh has been doing very well since her surgery. Her belly looks good and she had a good poop this evening. She still needs the pain killers and there’s still plenty of bile coming up in her feeding tubes, but she’s on track for a full recovery. And just when we start to think things are getting better…
Charlie gets sick. So far it doesn’t look like anything too major but it’s still not the peaceful Charlie we like to see. He had a lot of episodes during the early afternoon so the doctors ordered an x-ray. When the results came back, there was some haze in his abdomen, which means that fluid is building up in his lungs. So far they haven’t been able to pinpoint a cause, though they aren’t even testing for an infection since he’s showing no other signs of trouble. He’s getting lasix, which is a diuretic and should help to drain some of the fluids. Hopefully it will turn out to be nothing but excess fluid that clears out overnight.
Lily Bug tried her best to cause some trouble today too, but luckily her attempts to pull out her respirator tubes (again) were thwarted. Lil just loves to be on her belly and when she’s not, she will flail her arms around and pull on her tubes. When she’s on her belly, she sleeps soundly and her numbers are good and she doesn’t cause any trouble. Unfortunately, the babies can’t stay in the same position for more than a couple hours at a time so she’s got to be on her back every now and again. She’s going to be a little diva when she doesn’t get her way!
Between NICU visits, we were treated to a nice dinner with Christina and Doug and their two adorable kids, Owen and Dylan. It was great to get out. Thanks guys!
Charlie was in cute mode this afternoon. He was wide awake like we've not seen him before, and he was playing with his tubes and wires. If energy level is any indication, he's not sick at all.
Lily just loves being on her stomach. She props her little butt in the air sleeps comfortably. All bets are off though when she's laying on her back!
Annaleigh is looking pretty good. The swelling from the anesthesia is going down and she's resting comfortably. Next week this time she'll be the strongest of the three babies.
Since she's not in an isolette but rather an open bed, poor Annaleigh is subject to all the noise and light in the NICU. Today the nurses put a washcloth over her head so she's not so exposed. Hopefully she'll get into an isolette tonight or tomorrow.
Friday, July 24, 2009
Annaleigh is doing just fine after last night’s surgery. It will be a waiting game with her until her bowels start functioning normally, which will take about another week. She was lucid today and hasn’t needed any more pain medication. During our evening visit, she was wiggling about with her eyes open, just like nothing had ever happened.
Lily and Charlie continue to do well. They’re eating a lot and gaining weight. We got to hold Lily this morning and Charlie this evening (well, Brooke got to hold him; he started acting up when it got to be my turn. He’s definitely a mama’s boy!). We’re just waiting for them both to hit 1200 grams so they can try coming off the respirator. Hopefully they’ll take to it just like Annaleigh did.
In all, it was a good day.
I would also like to take a second to again write about how amazing the doctors and nurses are at St. Peters. Every day, we are met with positive, professional, and caring nurses who treat our babies like they were their own. The doctors are patient and kind and they always take the time to make sure we understand exactly what it happening with each baby. If we have a question or a concern, seventeen people jump to get us an answer. I know I’ve said this before, but we could not have asked for a better place to have our babies at this most critical time.
We will forever be indebted to St. Peters Hospital.
Annaleigh has a feeding tube in her nose instead of her mouth. The tube is used for helping clear the gross stuff out of her belly. It pulls at her nose but looks much worse than it is. She's also on a respirator for a week or so to help ease the strain on her body after the surgery.
Annaleigh is no longer in an isolette. She's actually in an open bed with a heat lamp over her head keeping her warm. It's loud out there but it's necessary because the nurses are always doing some check or other on her and taking her in and out of the isolette wouldn't be practical.
Charlie continues to grow. Grandma Pam saw him for the first time in over a week today and was amazed by his size. I'm going to try to put my wedding ring around his arm again on Monday and I'm not entirely sure it will fit! That would be awesome!
The Bug loves to put on a show for us. Every now and again, she opens her eyes real wide and flails her arms and legs about in such a way that we're convinced all she wants in attention. She's going to be our girly girl.
Lily also loves to be held. She breathes so much better when we're holding her. Again, we're pretty sure it's just because she wants the attention!
Thursday, July 23, 2009
The surgeon, Dr. Gallucci, went in and dug around and found that a small band had grown around her bowel in her small intestine (he called it a “congenital stricture”). It was there from birth, though there’s not a definite reason as to why it grew. The doctor compared it to a small piece of piano wire tied around a balloon. He cut a 2 cm piece of the bowel off to remove the band and then sewed her back up.
The band that grew is something that the doctor has seen before, though it’s not exactly common. Annaleigh had a number of advantages going for her to make the surgery a bit easier that it could have been. First, she was premature. Had she been a full-term baby, the band would have remained and tied off her intestines as she grew, causing all sorts of serious and potentially life-threatening complications. (So in some small way it is a good thing that our babies were born so early!) Second, she was in really good health. The anesthesiologist, the surgeon, and Dr. Hiatt all said that they’ve seen this type of surgery performed on babies who weren’t breathing well on their on, who had different types of infections, and who were just generally in poor health. Despite her GI issues, Annaleigh has been in very good health since she was born (if such a thing can be said for a 25-week baby).
So now we wait about a week to ten days. In that time, they will be watching her very closely. She’s getting regular blood work, x-rays, pain medicine, and antibiotics; she’ll remain on a respirator for the foreseeable future; and they obviously won’t be giving her any food. We can officially say that the surgery was a success when she is eating and pooping with regularity.
Assuming Annaleigh eats and poops by next weekend, the really good news about this is that Dr. Gallucci said “this will effect her exactly zero in the long run.” She won’t need any special treatments, she doesn’t need a stoma, and she won’t have any long-term side effects. As you can imagine, this news was a HUGE relief. After being told to it would last an hour or so, the surgery took about three hours, and in that time Brooke and I imagined all the worst case scenarios possible. At one point, we were both sure that we were going to lose our precious Annaleigh, so to have something so impermanent as the outcome… well, we were just beyond happy.
We hardly spent any time with Lily and Charlie today, but they understood. Both are doing well and putting on weight. Charlie is definitely not going to be getting the breast milk supplement because he couldn’t tolerate it for the second time now; instead, they’ll keep increasing his feedings and possibly give him some calorie-rich formula too. Lily had her central line removed today because she’s doing so well on her feedings and no longer needs the extra calories and vitamins. They’re both still not exactly expert breathers but at least they’re growing.
And that’s all for today. As a brief aside, today was the third time that Brooke and I had planned to go for dinner and a movie between NICU visits, and now, for the third time, our plans were abruptly changed. So we will never again plan to see a movie and have dinner!
We'll update again soon, and as always we'd appreciate any good thoughts and prayers you'd like to send our way.
Wednesday, July 22, 2009
On to baby updates:
Lily’s stay on BiPAP lasted approximately five hours. Her respirator tube got clogged around 6 pm yesterday and they decided to try the BiPAP. Lily did not like that too much. She had episodes and dropped her heart rate and respiration, and she just seemed unhappy. So the on-call doctor decided that poor Lily Bug needed the respirator. They put in a wider respirator tube, and so far it’s working great. Her oxygen numbers are better than they’ve ever been. Plus, she now is eating 10 ml of breast milk so she’s putting on weight consistently. She’s now up to 890 grams and is filling out really well.
Charlie continues to be exactly the same. He’s eating a lot (18 ml) and sleeping a lot on his belly. He continues on the respirator. Dr. Hiatt says that he’ll stay on the respirator until he reaches 1200 grams, which isn’t too far off—he’s at 1020 grams today. When he’s ready, he’ll get some steroid shots to help his lungs and then try the BiPAP. Besides his breathing and his eating, the other thing that remains consistent with Charlie is his amazing cuteness. Obviously we’re biased, but everyone who sees him swears that he’s adorable—even the nurses who are around babies all day say that he’s cutest one there. He must take after his daddy. (And Brooke continues to gawk about Charlie’s beautiful eyebrows. Really, it’s kind of weird how much she talks about them.)
Annaleigh is right where she was a couple days ago. She’s not eating because she’s having so many digestive issues. Her belly remains distended though not as badly as it was. Tomorrow she’s going to have a field trip to the radiology department for a special x-ray. Basically, the doctors are going to inject her with some dye that absorbs moisture from her GI tract and glows on the x-ray screens. They’ll use that to track the path of the dye and see what’s holding up her poop from being normal. Dr. Hiatt says that the test is as much medical as it is diagnostic, so we’re anxious for this tomorrow.
We had a nice visit tonight with the babies. There were no last-minute oxygen drops, no breathing issues… it was very pleasant. Let’s hope all our visits are like this one!
PS: Thanks to all for suggesting that we look into the free parking issue. Turns out, our friends Christina and Doug called today because they wanted to pre-pay our parking for us (how nice is that?!). They were told that we could get free parking passes from the charge nurse in the NICU. We asked about it and should have it ready tomorrow. So thanks Christina and Doug-- you just saved us a boatload of money!!!
Tuesday, July 21, 2009
First there’s weight. Each baby gets weighed every night, sometimes around 7 pm, and sometimes not until midnight. We always ask, even though we’ve been told again and again not to put too much stock in the day-to-day weights. What matters more is that they consistently grow from Sunday to Sunday. So it shouldn’t bother us that Charlie is down 10 grams from yesterday, or that Lily was having too rough a day to even be weighed today… but it does.
Then there’s the weekly measurements. Every Sunday night, each baby is weighed and then measured for length, head size, chest circumference, and belly circumference. I’ve started a chart to track their progress and so far they’ve each grown as they should. Lily has made the biggest jump in her numbers from the first Sunday and Annaleigh has made the smallest. It’s interesting to see something like belly size; we can see things like poor Annaleigh’s belly infection, which caused swelling and increased her measurement that week.
And then feedings, which is tracked in milliliters. Charlie is doing well on his 15 ml of breast milk and they’ll be adding the supplement again tomorrow to see if he can tolerate the extra calories. Lily has been reduced to 4 ml because she’s had a lot of episodes today and they were forced to bring her down in hopes of putting a bit less stress on her body. Annaleigh hasn’t eaten in three days now because she’s on medicine to help her GI issues, though there’s no real change on that front today.
Heart rates are pretty standard numbers and all the babies are attached to heart rate monitors all the time. Preemie heart rates are really high, averaging from 130 to 185 beats per minute. Until today, we haven’t seen any of them drop low, but tonight both Annaleigh and Lily decided to have issues and scare us. Generally all it takes is a shake from one of the nurses and the babies will bring that heart rate right back up to normal.
Probably the most important number is the respiration number. A low respiration number means that the baby is taking breaths that are too shallow, and shallow breaths are indicative of major respiratory problems. Anything under 30 is too low. Just like the heart rates, we haven’t had any issues with this for a while—until today. Lily was put on BiPAP today (not because she was doing so well; it was just that they had to extubate her respirator because it got clogged and the doctors thought they would let her try a step down). She’s having trouble adjusting to the change, which is totally normal, and because of that, all her numbers dropped. It was quite scary to watch.
Breathing issues cause a whole gaggle of numbers we need to obsess over. The most basic number is the oxygen percentage. Normal people breathe 21% oxygen in the air (another thing I’ve learned recently). Ideally, the respirators and BiPAP / CPAP machines should be set to give the babies 21% oxygen. This is rare, however. Annaleigh is the most stable and is usually between 21% and 24%, despite the fact that she needs the least help breathing and is only on CPAP. Both Charlie and Lily fluctuate greatly between 29% and 45%. The nurses can control the percentage of oxygen each baby gets with a simple dial attached to each isolette. The reason the nurse would need to increase the oxygen percent is…
The Sp02 percentXXXXXXX. This measures the amount of oxygen running through the babies’ blood at any given time. There’s a small band wrapped around a hand or a foot that somehow produces a number. That number should be between 83 and 93. Too high a number and the nurses say the baby is “over-achieving,” and they can turn the oxygen percent down closer to 21%. Too low a number and they have to add oxygen. But there are different degrees of “too low.” Charlie, for example, often dips down low to the mid-70’s, but he is usually able to bring himself back up without a problem. Lily likes to be more dramatic, as shown tonight when she dipped down into the mid-50’s and scared the crap out of her mommy and daddy. Her SpO2 dropped so low, in fact, that her nurse gave her a full minute of 100% oxygen, which would be dangerous for long periods of time but enough to bring her blood to the oxygen levels she needs. The on-call PA has actually decided to sit with Lily for a while and watch her numbers to get a better sense of what she’s doing. Hopefully it’s nothing major.
We also need to pay attention to her PEEP and Ppeak numbers. The Ppeak is the amount of pressure that the machines need to inflate the baby’s lungs. The nurse explained it by describing how, when blowing up a balloon, the first breath is much harder—that first breath is the Ppeak number. The lower the number, the less pressure is needed and the less dangerous it is for the baby. Luckily, all three babies are at 16, which we’re told is the ideal number. The subsequent breaths into the balloon are represented by the PEEP numbers, which should be right around 6. Again, that’s where all our guys are right now.
With all these numbers, we sometimes get confused. We both carry notepads to write things down on so we don’t get things mixed up. Dr. Hiatt has even joked with me about how much I write down. Little does he know that I have no memory for numbers at all! Without my notepad these blog updates could not exist!
Sorry for the lack of pictures today. Stupid me forgot my camera in the car and was feeling too caught up on obsessing over numbers to go back to the parking garage. Incidentally, it costs $3 to park every day and another $1.50 for Brooke to get a drink from the vending machine on the way out. Don’t even ask what the numbers are in terms of the costs the babies are accumulating in the NICU… thank god the insurance company takes care of those numbers!
Monday, July 20, 2009
Poor Annaleigh had an x-ray yesterday, another at 8 this morning, another at 1 this afternoon, and a fourth at 8 this evening. The doctors compared them and saw no change. We were hoping for a positive change, but at least things aren’t worse. She also had a surgical consult today but the surgeon seemed unconcerned, noting that her belly is “soft” and she doesn’t seem to be in any sort of discomfort. The concern is that her GI tract isn’t functioning as normal. Another x-ray is planned for tomorrow morning and the hope is that there will be some progress. If not, there are some options for how to proceed, but hopefully this will take care of itself soon enough. In the meantime, our poor little monkey can’t eat anything and is getting all her calories and nutrition via iv.
As if the barrage of x-rays wasn’t enough, Annaleigh also had her brain ultrasound today. They were looking to see if the blood clot they saw a couple weeks back has broken up. Fortunately, the results were “optimal,” according to Dr. Hiatt. The clot is starting to liquefy and there is no swelling in the parts where swelling would be a problem.
Charlie and Lily both had ultrasounds today too, but the results won’t be in until tomorrow afternoon. Dr. Hiatt told us that there is only a 3% chance that this round of ultrasounds will find anything that the first round missed, so we’re not too concerned.
Lily remains the same as she’s been for the last four or five days: stable but moody. She has episodes pretty regularly but usually manages to correct herself without any help. The good news on her is that she keeps packing on the pounds (not literally, unfortunately). She’s increased her weight to 876 grams, up from 770 just three days ago. If she continues to increase her size at this rate, she’ll catch up to Charlie in no time.
Charlie is doing well, with only a small hitch today. The doctors decided to give him some extra calories in his breast milk. They just mix in a powder to the milk (I wonder if it’s the same supplements that body builders take?) and he gets about 24 extra calories per feeding. After the first feeding with the supplement, he had a bunch of spit up, which isn’t normal for him. So they reduced his feeding for a couple meals and stopped the supplements. His latest feeding (9 pm) was back to his normal 13 ml without the supplement, and they’re hoping to increase him to 15 ml tomorrow if all goes well. They’ll try the supplement again too, though it’s not imperative that he gets it.
We’ve noticed some definite personality quirks with all three babies, and we get so much joy out of watching them develop. Annaleigh still prefers to be left untouched, making faces when we try to hold her hand or touch her back. Charlie is so docile and calm all the time that absolutely nothing bothers him at all. Today we saw his night nurse change his iv; you’d think that poking a needle into his arm would cause him some discomfort and get some kind of reaction, but our little man didn’t budge. He laid there prone and slept as content as could be. And then there’s Lily. Oh, how Lily made us laugh tonight. Whenever she’s handled a lot (bath time, weighing, changing positions, suctioning, etc) she gets “shell shocked.” She’ll lay there with her eyes as wide as can be and her arms raised up and not move for minutes on end. She looks like a statue! Tonight, her nurse was suctioning her throat and mouth, and Lil kept thrusting her tiny hands in front of her mouth and trying to push the nurse’s hand away. And when the nurse finished, she lay still with on hand stretched out next to her head and one hand on her hat and her eyes staring straight ahead like a deer in headlights. Oh, how we laughed!
Lastly, we wanted to put a call out to any newer parents of multiples out there who may be reading this. We found a list of companies who donate products (diapers, formula, etc) to parents of multiples and we put my mother in charge of writing to them. If any of you have had any luck getting free stuff from companies please let us know. We’re going to need all the giveaways we can get! Thanks for any and all suggestions!
Sunday, July 19, 2009
During their rounds, the doctors decided that Annaleigh has been doing so well lately that she deserved a “promotion” from BiPAP (Bi-level Positive Airway Pressure) to CPAP (Continuous Positive Airway Pressure). This change is huge! Basically, it means that the oxygen that is being given to her through the tubes in her nose is no longer being pumped into her lungs because she’s breathing well enough on her own that she doesn’t need any help. The tubes simply bring the oxygen closer to where it needs to be so it’s a little easier for her to get the air she needs. Preemie lungs are usually very under-developed and need help inflating and deflating; Charlie and Lily both need the respirators to do that for them all the time. The BiPAP does some of the inflating/deflating and the baby does the rest of the work. Now, Annaleigh has been so consistently strong that she’s on CPAP and doing all of the inflating/deflating completely on her own. The fact that her lungs are strong enough at this early point to only need the CPAP is a sign that she’s doing really well. The picture above is the CPAP machine-- it looks like something out of a high school science experiment!
But then there is the step backwards. After one of her early feedings, Annaleigh coughed up a lot of her breast milk, which prompted the doctors to look at her stomach again. It has been over a week since Annaleigh has had any lingering effects from her belly infection, but that doesn’t necessarily mean that her GI tract is healthy, and that’s what the doctors were worried about. So they did an x-ray and saw some black spots in her intestines, which they say is probably blockages that are preventing things from working as they should. Since she’s not pooping with any regularity, they’re concerned as to why this is happening. So first they gave her—get ready for the ugliest concept known to man—an enema (yuck) and suppositories (also yuck), which didn’t have much of an effect. She was getting a blood transfusion (thanks Grandma Pam!) this evening and her nurse thinks that the combination of things (plus stopping her feedings for a while) will cause an improvement. If not, our poor little monkey will have a second enema tomorrow. Joy.
So her lungs are great but her GI needs a boost.
And then there’s Charlie. Our Chunky Charlie continues to eat circles around his sisters and he seems to get noticeably bigger every day. In fact, he’s doing so well with his food that he is no longer getting any iv supplements! All of his nutrition is coming from his mommy’s breast milk! So right now (and for the foreseeable future) the only iv in his body is for the MRSA medicine and blood transfusions (that seems like a lot but there are days when one of the babies has a needle in both arms and both legs). However, some of his blood work came back with a bit of a concern today—nothing major, but enough to get a response from the doctor. His H and H levels (Hemoglobin and Hematocrit, which is a standard blood test they do almost daily on each baby) are too low, which wouldn’t be a big concern if he were a bit more stable with his breathing, but because he desats a lot there is potential for the two “minor” issues to cause a problem. So he’s getting some of Grandma Pam’s blood tonight and they’ve “cut back” on his feedings from 13 ml to 10 ml for the rest of the night (we had to assure our little porker that they would increase his meals back up tomorrow—he was worried).
Lily was actually the one with the fewest issues today. What a change! She’s still having lots of episodes, which keeps her nurses on their toes. Her feedings are solid at 4 ml every three hours and she is always active when we visit. She opens her eyes more than her siblings and she’s always kicking her legs and flailing her arms all around—she likes to put on a show for us!
Tomorrow will bring a second round of brain ultrasounds for all three babies. The ultrasounds are routine for Charlie and Lily—all preemie’s have them at one week and three weeks (and then again before they go home). Annaleigh had the slight bleed in her brain when they did the first ultrasound a couple weeks ago so they’re checking to see that the clot has broken up and started going away. We’ll also be watching her stomach to see how she’s making out after the fun today, and how she’s doing on the CPAP. We’ll be paying close attention to Charlie’s blood work and feeding schedule, and, as always, we’ll fret about Lily’s episodes. So it will be another busy day tomorrow with a number of important events to keep us nice and worried. The NICU fun never stops!
Saturday, July 18, 2009
Annaleigh came out for a visit with her daddy for about 45 minutes today. I’ve only gotten to hold her one time, and this time was even better because she opened her eyes to look at me. It was so great! She kept one eye open wide for about three minutes, just staring at my face. It felt like she was really seeing me—the real me, not just my nose or my eyes. What a great feeling! Brooke was nice enough to let me hold her the entire time, and I really appreciated it. Our little monkey is up to 4 ml of breast milk for her feedings and is digesting them well. She’s only had a few episodes all day; we were “lucky enough” to witness one tonight, but she calmed down and is doing great.
Lily Bug resumed her feeding today for the first time in three days. The nurses yesterday said that her heart murmur was all but gone, but they heard it again a little today. That’s no surprise but we’ll wait and see what Dr. Hiatt says about it in a few days. She continues to have a lot of episodes, but she mostly is able to correct them herself. Her weight is up to 810 grams so she’s doing exactly what we need her to do right now—gain weight!
Charlie continues to be our little chunk. He’s eating his 10 ml of breast milk and digesting it all happily. He’s had no new pimples since that second one was drained a couple days ago. The nurse practitioner actually checked the spot the last pimple was and found nothing at all, which was a good thing. He’s continuing his MRSA medicine, probably for another few weeks but that’s not stopping him from growing. He was wide-eyed for a while during our afternoon visit today and he just looks content with everything.
I spent a lot of time talking to one of the nurses today. She gave me lots of information about what the babies can see and hear and feel. She told me that they definitely recognize Brooke’s voice, which is probably why Charlie’s oxygen levels drop or rise so dramatically when she enters the room. They may recognize mine, too, since I read to them every night while they were in Brooke’s belly, but that’s not a sure thing. She also told me that the babies can’t really “see” us yet and they won’t be able to for a few months, but they can “sense” us by our touch and our smell. She was very adamant that babies have a strong sense of smell. It was an interesting conversation.
Three weeks ago tonight our world changed. We’re so proud of our little babies and we love them so much more than we ever dreamed possible. Happy three weeks, babies!
Friday, July 17, 2009
Our evening visit brought us more good things. We got to hold Lily Bug for the first time! When we arrived we asked Lily’s nurse if we could hold her and she said no. But after watching Joe talk sweetly to his daughters she apparently felt bad, so she checked with the respiratory team who told her that it was fine for us to hold Lily. It was wonderful to finally have her in our arms and she seemed to enjoy the one on one time. Joe even got to read Lily her evening story while cradling her in his arms. It was heaven and now we can happily say that we’ve gotten to hold each of our precious babies!
Although holding Lily was the highlight of our evening, we were also happy to hear that both girls had gained weight. Lily is now weighing in at 790 grams and Annaleigh is 740 grams. Charlie had not been weighed yet, but we’re confident that he’ll put on some weight thanks to his increased feedings. Charlie was also a good boy tonight, having only one recordable episode in a 3 hour span, which was a definite improvement for our boy.
We also need to send a big thank you to Marcie! I “know” Marcie from one of the message boards I visit and she is a frequent commenter on our blog. When we arrived at the NICU this evening we were handed a big envelope that had come in the mail for us. Inside were three beautiful signs from Marcie decorated with each of our babies’ names. They are absolutely adorable and once they’re home from the NICU I plan to frame them to hang in the nursery. Once again, we are overwhelmed by the kindness we’ve been shown by so many, many people. Thank you, Marcie! You helped make our good day even better.
So, today was a good day. We know that the peace we feel now is most likely temporary, but it’s days like this that get us through the bad ones so we are feeling very thankful right now.
Annaleigh continues to do well. The nurse didn't fold over her diaper in half like they usually do, so it comes all the way up almost to her arms!
Charlie has it so rough; he has to find the time to eat so much food! Damn, he's cute!
We finally got to hold our Lily Bug! Words can't say how happy we were.
Joe reading "What's Wrong, Little Pookie" to Lily. This was the first time we've read to one of the babies while they were outside the isolette; it's much better this way!