Sunday, April 30, 2006

Success at Last!

Saturday's little trial was a complete success even though it didn't start off well.

When I arrived at 8:00 a.m., Beth was not wide awake as is ususally the case at this time of the morning. So, I settled in to wait. The idea of this trial was to see if Beth could follow her own hunger cues and wake up on her own and feed enough. She didn't wake up so at 8:45, I started taking her temperature and changing her diaper. This awakened her but didn't get her motivated enough to nurse. We tried and tried but I couldn't get her to latch on comfortably.

Then I noticed it. Her NG tube (the one in her nose) had been changed during the night and it was the 6.5 tube, not the smaller 5 tube she had had for the last week. Again she sounded all snotty and was fussy while trying to nurse. After 15 minutes I asked her primary nurse and she brought in the doctor. Sure enough, Beth had been changed during the night. Our nurse suggested changing it back to the smaller tube and the doctor wisely suggested just leaving it out to see how she did.

This turned out to be the key to Beth's nursing success (perhaps if we had done this earlier, she might not have had so many troubles with the bottle). Within ten minutes of taking the tube out (it tickles a lot and takes a while to calm her down), Beth was happily nursing away making those cute slurping noises and smiling. She nursed for another 13 minutes. She also gave a few good "sailor" burps before settling down to a contented nap.

We tried again at noon and she obliged with a healthy 15 minutes and then another few minutes. By this time I felt we were getting the hangs of it. At 3:00 she wasn't waking up to nurse so I tried gently to stir her from her slumber. Ah, but a mommy really doesn't want to wake her sleeping baby right? I couldn't do it so her nurse came over and showed me how. We put her in her crib (not in my warm comfy arms), opened up her blanket and started talking to her and moving her arms gently. Beth eventually gave in, opened her eyes and stretched.

We got a great nursing sequence this time but it was nearly 4:00 p.m. by the time she really latched on. We got almost 30 minutes of constant nursing at this point and a few good burps. As you can imagine, she was really tuckered out by now and when she fell asleep this time, there was no way she would be stirred before 6:00 p.m. to feed again.

At one point she had a "wet burp" which indicated she actually had too much in her tummy. I don't recall wet burps with Elliott but perhaps I just assumed spit up and wet burps are the same. These were almost pure water and she just burped spontaneously while laying down. It does seem like Beth is easy to burp which will be a nice change from Elliott. I was always having to get up 30 minutes after he had fallen asleep because he hadn't managed to get a full burp done while feeding. Perhaps I wasn't as experienced with him but Beth is substantially easier to clear out. In fact, I'd say our little girl can already compete with most guys in terms of volume!

I had to leave at 6:00 due to shift changes so I had a quick discussion with the doctor. I was hoping to convince her that Beth fed so well she could go home soon but the doctor wasn't ready to agree with me. She did agree that the NG tube should be left out and the nurses would try through the night to let her feed on-demand with the bottle.

At 8:30 p.m. she had awakened on her own and was already nursing. By 9:00, she had taken 60 mls (6 mls more than her prescribed feed). When we called in the morning, Beth had taken all of her night time feedings with the bottle and on demand!

This is supposed to be one of qualifying factors for her going home. When I show up this morning, I hope they will ask me for Beth's car seat. This means they are going to do a car seat test (she sits in it for an hour while hooked up to monitors to see if she continues to breathe). I'll keep nursing her today and Mike will try a bottle-feeding. It might be difficult for her to take a bottle from me because she associates me with breast-feeding.

The nurses tell me that rarely do they send a baby home who is breast-feeding better than bottle-feeding. Breast-feeding takes more energy than bottle-feeding and babies are more satisfied with the bottle. I'm not sure why Beth has taken to the breast better but I suspect it has something to do with my near manic commitment to getting her to nurse. We have spent weeks trying to get this started and she feels safe because she is in my arms and can control the flow better than with a bottle.

I am also sure that the NG tube was an irritation and constricted her breathing. The developmental specialist told me it would be a bit unconventional to do a breast feeding trial as a qualification for going home rather than bottle-feeding. This might mean that we will take a few more days to convince the doctors that she can go home. We'll see. In any event, I am sure she will be home sometime this week.

There aren't words to express how this will feel.

Friday, April 28, 2006

A Feeding Trial on Saturday

Arghh!! We have had a rollercoaster ride the last few days. Everyone involved in Beth's care is looking for patterns in her nursing/bottle-feeding behavior. The only apparent constants are her need for quiet and a slow introduction to the bottle nipple. She has even slacked off on nursing which in past weeks had been the only thing we were sure she would do.

We are all watching her for any clues. For example, two days ago she did very well in her morning feed and was then treated to near-constant rocking by two volunteers. When I showed up in the afternoon to try bottle-feeding her, she simply couldn't get it together. She choked and her heart rate dropped, although not substantially enough to record a brady. I rubbed and patted her back and her nurse attentively watched to see if we could get it back without oxygen. She did eventually come back without additional support but only wanted to cuddle after that.

Was she held too much on that day? Her nurse says no way. Most of us would agree that you can't hold a baby too much but is it possible that her sleep was being disrupted and she didn't get a deep enough sleep? We had quite a discussion about that.

Is she getting confused between bottle-feeding and nursing? Another conversation suggests that this might be possible but she will need to learn both. It is also clear that every time she has trouble nursing or bottle-feeding, she is just plain tired and is falling asleep. In addition, last week she bottle-fed a full feeding and nursed for 20 minutes. This suggests that she can switch between the two when she wants (or is ready) to.

My concern yesterday was that she had a cognitive issue. The nurses quickly jumped on that one saying that Beth shows many obvious signs of intelligence and alertness. Many of these nurses have over 20 years of experience and their intuition and experience give them unique insights in development. They tell us that Beth is bright. She is just a preemie and preemies need more time.

We started comparing Beth's progress with Elliott's. Elliott was 10 days overdue and had nursing issues as well. It was nearly 10 days before he could figure out how to nurse (that and having his frenulum cut because he was tongue-tied). Perhaps our babies need extra development time in the womb. If so, Beth would be still far from ready to take the nipple.

Obviously there is no reason to push her other than our strong (ney, overwhelming) desire to have her home. It is also very difficult to see smaller babies happily nursing away and 34-weekers going home. Being that Beth was one of the earliest babies in the NICU, we are constantly reminded by the nurses that a super preemie's development can be maddeningly slow.

On Thursday I left very discouraged. Beth couldn't take a full feed and two little ones were going home including one baby who has an infection and by my eyes, is less than 5 pounds right now. Despite being very happy for them I still cried while holding Beth.

She's Alert in the Morning!
We've talked with many nurses and many of them recognize that Beth is frequently alert and chewing on her hands at 8:00 a.m. Given that she shows signs of wanting to nurse, the Developmental Specialist suggested that we try feeding her "on demand." She has been wondering how Beth would do if allowed to nurse on her own schedule. Usually such a trial wouldn't be possible because preemies are so small when the get the hang of nursing that they can't risk a day of poor calorie input. Beth, however, is a very good size and on a good growth curve. So this morning we collected some key people: a doctor, the nutritionist, two nurses, the developmental specialist and mommy to talk about a trial. The Developmental Specialist wanted to put Beth on a 24-hour trial to see if she would respond to a bottle or breast if allowed to nurse on-demand.

We looked at every angle. We considered which nurses would be on during the day and at night. We looked at her weight. We considered her bath schedule. We looked at diaper output. We looked at meds. We determined that a trial sooner than later would give us valuable information to plan for her real feeding trial before discharge. We decided that tomorrow would be a good day to try.

Saturday's Feeding Trial
Beth's primary nurse asked to work on Saturday so that she could be her nurse for the trial. I will show up at 8:00 a.m. and let her nurse on demand until the shift change at 6:00 p.m. The night nurses will give her bottles on demand so we have to make sure they are comfortable with her fickle feeding skill and the Haberman bottle. Since it is impossible to know exactly who will have her, this trial might start tonight or it might continue on Saturday night/Sunday morning.

I'm not really sure what will happen after the trial. If she shows us she can respond to feeding on demand, we'll be closer to getting her home. You see, this is a bit risky because she might not take in enough food and lose a little weight. Because she is over 6 pounds and 9 ounces (2995 Grams), everyone feels this is okay to do. She won't qualify for discharge until she takes in more than her prescribed diet. They can't accurately measure her input from breastfeeding so we won't get to count this trial. However, we will learn a lot and Beth might surprise us. If she doesn't do well, we'll just go back to the standard routine and continue to let her mature at her own pace. She'll eventually learn to take a bottle...maybe a sippy-cup.

I am thankful that so many people in the NICU are willing to be creative in her care. Feeding protocols seem somewhat subjective based on each baby's maturity but obviously the doctors can't discharge a baby that isn't taking in enough food to grow and thrive. I think it can safely be said that 1) super preemies have a harder time figuring out how to nurse/bottle-feed and 2) Beth is especially difficult to feed due to her oral aversion and her extreme sensitivity to stimuli. With time, these issues should subside but will Daddy and Mommy go crazy while waiting?

Tuesday, April 25, 2006

More Bottle-feeding Dilemmas

First the good news: Beth weighed in at 2895 grams which is about 6 pounds and 6 ounces. Now the bad news: She is getting to be the biggest preemie in the NICU!

Actually that isn't bad news at all for it just means that the bigger she is when coming home, the more comfort we will have that her body is ready for life without monitoring devices and constant medical care. Aside from another bottle-feeding brady that occurred on April 22, Beth is doing very well and completely free of medication.

The bottle-feeding is a real sticking point. Beth is still highly sensitive, much more so than the other babies in the intermediate nursery. There are 3 and 4 pounders (my guess because the nurses can't share other details with us) who are taking bottles quite happily although they may not be taking their entire feeds. Beth is still very fickle and her sensitivity means that any out of the ordinary sound startles her and messes up the delicate rhythm she is working so hard to develop. Here's a run down of the last three days feeding adventures.

On Sunday night the 23rd, I arrived at 8:00 to spend some time with her and work on the 9:00 feeding. I took her temp, changed her diaper and weighed her and then began the process of settling her down for a bottle. The nurse that night was not accustomed to NICU babies (I have since found out) and she was not familiar with this special Haberman bottle that is prescribed by the developmental specialist. I hadn't used that bottle either so I was little tentative when using it. I gradually gave Beth the nipple, letting her first get used to it with a small amount in her mouth. Then as she started to suck, I gave her more of the nipple and rotated the bottle which would increase flow amount. The bottle didn't seem to be working correctly and the top popped off. The nurse and I reworked and she even brought in another nurse to help. Those two decided that the $20 Haberman bottle was defective and they asked me for the Avent bottle.

Now here is where it got awkward. The developmental specialist specifically had me remove all the Avent bottles because we decided to keep one bottle type for Beth so she could grow accustomed to that one alone. The Haberman is a very safe bottle because the flow out the nipple can be controlled by the feeder. Since Beth gags easily, this helps prevent the terrible bradys. Since those bottles were gone, the nurse asked me to use the standard bottles that most of the babies use (not Beth, though). I agreed to try for only a few minutes. Five minutes later, I stopped trying because I just didn't feel right about it.

I spent another hour trying to settle her down and went home very discouraged.

Curiously, the next day Beth was a nursing maniac! I showed up a few minutes after 9:00 a.m. and the developmental specialist had already come close to finishing a bottle feed with Beth and I commenced taking these pictures of her is a very comfortable and relaxed state. In fact, she was so comfortable that when I took over to burp her, she was rooting all over me and sucking on my shirt and exposed skin! I let her nurse for another 20 minutes and we spent an hour just enjoying each other's company. Since she was doing so well, the nurses decided to send me home so I could come back at 3:00 to try again (that and the fact that Beth wouldn't settle down to sleep). The nurses told me "you smell like milk to her! She'll never sleep unless you leave!"

Sure enough at 3:00 p.m. she took another full bottle (fed by the developmental specialist). I cuddled her again before coming home to pick up Elliott. That night they tried again at 6:00 p.m. and she took her third bottle of the day!

Ah, but a baby works on her own schedule...

That night the nurse didn't have experience with the Haberman bottle and she couldn't get her to take anything from the Haberman bottle. And, the next day (Tuesday) she couldn't get organized again despite the developmental specialists best efforts at 9:00 a.m.

I tried to bottlefeed Beth at 3:00 p.m. and we did have mild success with her taking about 28 mls (her full feed is 54 mls). However, poor Beth kept falling asleep and seemed uncomfortable with the bottle yet again.

In a pow-wow with the developmental specialist and a few nurses, we decided not to have her bottle-feed tonight despite the doctor's orders to try 1x per shift. We are going to develop a list of night nurses who know Beth and her sensitivities and only allow those nurses to bottlefeed her. If no one is around who has had success, then she will only be fed through the tube. Needless to say, Mike and I are going to be showing up each night for the 9:00 p.m. feeding so we can make sure she at least gets to try with us.

There is also some talk that if she just isn't getting this, we might give her 24 hours of just breastfeeding. This will be complex because we have to weigh her before and after feedings (or pull it back from the gavage tube which isn't highly accurate). It also means that I will have to live at the NICU for 24 hours which will be difficult at home but not impossible.

We all agree that Beth will probably be a breast-fed baby which has been our intent all along. She is still very comfortable nursing and while she still isn't taking a full feed this way, she is very organized and relaxed (almost too relaxed while nursing). When she gets home, we might find that she gradually learns to take the bottle in a nice quiet home environment with consistent feeding from Mommy and Daddy.

After all that has transpired, who would have thought that this would be the limiting factor in taking Beth home...

Saturday, April 22, 2006

Weight: 6 pounds and 3 ounces!

Progress in Bottle Feeding

While we can't say Beth is going to town with the bottle, she is gradually getting better in taking the bottle. For the last two days she has taken one full bottle during each shift. Yesterday she also nursed very well and managed to take in 13 mls from Mommy. The nurses can measure just how much she takes in by gently pulling back the milk in her tummy through the gavage tube. This is a bit inexact because breast milk is digested almost instantaneously.

She did have a desaturation while being bottle-fed this morning but this was a minor desat and not charted. Beth's last brady was recorded on April 15. She must be free of bradys for 7 days before she can go home so we are clear of that hurdle. However, we are a long way from her having the strength and coordination to bottle-feed on her own.

It seems like this part will take forever and be entirely on Beth's schedule. Yesterday she was a good strong nurser, pulling in big gulps of milk without any trouble. Today she was clearly tired and I couldn't keep her awake for more than two or three rounds of sucking. If you've never seen a baby nurse, they take 8-12 sucks and then they swallow and rest before starting another round of sucks. Beth can often get a good round or two in but on days like today, she just conks out before she can get going again. Her success is directly related to how badly she wants to sleep. She seems to have a good pattern worked out while nursing but is still tenuous with the bottle.

The nurses call this "being coordinated" and they attribute a lack of coordination to an immature brain. Beth is still only 37 gestational weeks so we can give her time to get it together. Now that we have backed off the pressure and are being sensitive that she might develop an oral aversion, she is less anxious during feeds. The smaller gavage tube is not irritating her nasal passages and thus, she is breathing better during feeds and during rest. Good observation on the part of the nurses and Mommy and Daddy convinced the doctors that she needed a smaller tube.

It is interesting to see the great differences in every baby at the NICU. While we need to respect the privacy of all the families in the unit, one can't help but notice how other babies are progressing and hear a little about their treatments (the nurses and doctors are very good about keeping the private and important details quiet). You learn that the smallest baby might be breathing better than a full term baby and might be a good eater too. Right now Beth is next to a baby who is much smaller than she and has the larger gavage tube in and is taking a bottle quite well. Other babies that seem to be in the 3-4 pound range are happily nursing away and taking almost all their feeds from a bottle but might need a little oxygen still.

You clearly can't compare your baby's progress with any other's. We've also learned not to put expectations on a homecoming. It still seems probable that Beth will be home in a week or two but we can't be entirely sure. We are now entering our 11th week (on Tuesday) and while we have grown very fond of the nurses and doctors and enjoy seeing the triumphs of every little baby in the NICU, Mike and I grow wistful when seeing other babies go home.

Elliott got to see Beth again today and his obvious love and excitement chokes us up. Even the nurses get teary eyed when seeing Elliott blow kisses to Beth through the window. Today he brought her the pink Easter bunny and wound up her music box so Beth could hear and watch her little head rock from side to side.

Grandma got to visit Beth on Friday and held her for quite a while. This moment really struck me as being about as close as we've ever been to normal: Grandma holding Beth with no fear of a brady, not afraid to overstimulate her with caresses or cooing, and just purely enjoying the moment. I've finally placed my finger on what it feels like to be with her. If you strip away all that typical parental love and amazement at the new life in your hands and try to figure out what is so special about Beth, it seems to me that you just feel privileged to be with her. I'm not sure I explain it well but when looking back on all that transpired, she seems to be a true miracle -- the chance to witness a miracle comes so rarely in life. God wanted her here and while I'll never understand the adverse conditions and the pain we experienced in getting her here, you can't deny that a greater power has been at work.

Wednesday, April 19, 2006

Daddy's Soothing Touch

Daddy's usual routine is to visit Beth on his way home from work. The NICU is closed between 6-8 in the morning and evening so this makes it difficult for Mike to have a long uninterrupted time with Beth. He usually gets at least an hour with her during the week and longer visits on the weekend.

Mike is very hands-on and not afraid of a dirty diaper or spit-up. In fact on Beth's first day in the NICU, the nurse asked us if we'd like to change her diaper (remember the 1.5" by 3" bandaid I described). I was too scared to do anything and Mike eagerly jumped in, happy at the chance to do something to help after watching helplessly by my side for 7+ weeks.

Yesterday he came home from his visit (I was hungry for every detail because I couldn't visit myself) and told me how cute and big she was getting. He then told me how she was clearly agitated and uncomfortable and the nurses had had no success getting her to take a pacifier. Daddy held her in his arms and softly stroked her forehead. Beth immediately started to relax and twitch her mouth into a smile. Gradually she started to take the pacifier and then sucked on it for 15 minutes before drifting off to sleep.

The nurses were impressed. Daddy instinctively knew the right thing to do and he knows her needs after spending so much time with her. Beth displays her tension by wrinkling her forehead. This is becoming less noticeable now that she is getting fat but when she was just skin on bones, she could scrunch her forehead like no bald-headed professor I ever saw. When we could do nothing else to comfort her, we would put our hand on her head and on her feet to give her those boundaries she craved. Since that time, she associates a hand on her head (and probably our familiar smell) with comfort. It is a wonderful feeling to give comfort to your child.

A friend of ours who has known her share of preemies said that during her visits, she has always used the same touch with the babies so that they knew who's who. Each person would have a specific greeting touch and the baby got to know each person and who was comfort and who gave icky shots or other medical care. It helps them to know what to expect and to have a cue when they can relax. I would expect Beth will always associate a touch on the head or forehead with comfort and it will be interesting to see how long this carries into her young life. Heaven knows this baby will be held all the time. We indulged Elliott with copious hugs and cuddles and rocked him to sleep nearly every fact we still cuddle Elliott all the time. He is loving boy who enjoys giving and getting hugs and kisses. But really. Is all the attention we parents give our babies and children just for them or for us, too? We are the lucky ones to have them bring concrete and unquestioning love into our homes.

Haberman Bottles, Diuretics and Mom's Cold

Beth is still not taking the bottle and the nurses are pushing it either. Since I have been sick the last three days, I've not been able to hold or nurse her so I have extreme angst right now too. It seems Beth started a coughing fit and needed another blow-by of oxygen a few days ago so I am relieved that everyone is letting her rest for now.

The developmental specialist did try a special bottle for Beth yesterday. This bottle, called a "Haberman" allows you to adjust the flow right at the nipple and while the baby is nursing. I was told that each one costs nearly $20 so this isn't something most parents find in the local Babies 'R Us. Cost means nothing to Beth, however, as she only took half her feed when they tried this special bottle yesterday. Since that time, she has been allowed to take her feed via the gavage.

Beth has been sounding very nasally and congested. The nurses had speculated that she had a cold or that the larger NG tube inserted last Tuesday was too large for her nasal passages and causing irritation. I also wondered if it was impeding her breathing and thus making it hard to catch her breathe while learning to bottle-feed. Yesterday the doctors agreed and changed her NG tube back to the smaller size (a 5 from the 8 she had in). I don't know what the sizes refer to but the difference between the two is that milk augmented with Beneprotein tends to stick in the smaller number 5 tube. Therefore she can't be bulbous fed because the milk will get stuck in the tube. A nurse could gently plunge it down with the syringe but the touch must be exact. They couldn't let mommy or daddy feed this way. So, as of yesterday she had the smaller tube and was back to being fed with a pump. Today I spoke with the doctor about this and asked when the Beneprotein would be discontinued. Upon checking the notes from the dietician, she found this had already be recommended (along with an increase in volume to 52 mls/day). The doctor then wrote the order to discontinue the added protein. This will allow her to be bulbous fed.

Why is the bulbous feeding important? As I discussed in an earlier blog, the nurses feed it is only an order so that she gets held more (which with all these nurses is no inconvenience because they all seem to love holding every baby in their care). Since I haven't been there for three days due to my cold, I want to do everything I can to encourage nurses to hold her. This probably isn't necessary but it also gives Daddy and I something to do when holding her.

Eye Exam
Beth had another ROP exam today to look for eye development. Apparently the doctor saw a small abnormality two weeks ago. Whatever he saw then has resolved itself and she will be looked at again in two weeks.

Beth has been receiving sodium and a diuretic. As of the 12th, the diuretic (Aldactazide) and sodium have been discontinued. It takes 5-7 days for the diuretic to wear off so we might see her collect extra fluids yet. To this point she is easily clearing them from her system so we aren't concerned that this will change.

Size and Weight
Beth continues to grow. She is currently 2655 grams (5 pounds and 13.5 ounces) and she is 18 inches long. She appeared to shrink last week when she measured a half centimeter less than her previous measurement (the night I was there!). Clearly babies don't always cooperate when being stretched out so this discrepancy wasn't alarming. On Friday the dietician showed up wanting to measure her again to figure out what the accurate measurement was. Fortunately I was there watching her sleep soundly. Being a protective mommy, I asked the dietician if it was really important to measure her or could it wait until her 6 p.m. feeding when we would wake her for the diaper/temp/feeding routine. She graciously acquiesced and said it could wait until Tuesday. So, Beth got another hour of uninterrupted sleep!

Any mom who ends up sick while their baby is in the NICU knows how hard it is to stay away from the hospital. Today is the third day of my self-imposed banishment. While I may not be truly sick and may just be having an allergy attack, I can't risk exposing her or any other NICU baby to a respiratory virus. Hopefully this will clear up tomorrow and I'll be back with more photos. I so miss holding her as she snuggles against my skin. I could almost describe it as burrowing for she seems to meld into me -- a feeling I'll never ever forget.

Monday, April 17, 2006

Beth Being Gavage Fed

This was Beth's Easter Dinner being fed to her by Daddy. She used to be fed by a pump but now we are using the bulbous method. Last night she weighed in at 2580 grams which is 5 pounds and 11 ounces!

Backing Off the Bottle

The bottle-feeding progress is not going any better over this past weekend. Beth had another brady last night when the nurses tried to bottle feed her. The night nurse and day nurse conferred this morning and told us they think Beth as an oral aversion as a result of being intubated. It seems that preemies develop a gag reflex after having the ventilator tube pushed down their throat. Some babies then associate anything foreign in their mouth with the irritation they experienced when on a ventilator. Their guess is that this is some of Beth's issue with being bottle fed. She seems to nurse fine with me but just can't get a hang of the bottle and overreacts.

Most of Beth's nurses are incredibly sweet and caring people but they have had quite an urgency to get her bottle-feeding (as have we). This is the only factor keeping her from going home. As a result of these discussions, everyone is backing off of the bottle feeds and we are just going to let her play with the bottle nipple, just as she did while "recreational breastfeeding." Their hope is that she can be desensitized and then calmly take the nipple.

We have no idea how long it will take to get her over this hurdle but if I know Beth, it will happen when SHE is ready.

There are some other issues as well. Beth has been sounding congested since her gavage tube was replaced with a larger size. This may be irritating her nasal passages causing swelling and excess secretions. She might also be getting a cold but we can't figure how that would happen in such a clean environment. A third explanation could also be related to being free of all medications. She has been gradually weaning off a diuretic and sodium. Both of these help her system eliminate excess fluids which typically collect in the lungs. Her lungs have sounded clear but the combination of factors might be causing this nasal congestion. First, she is using more energy to bottle-feed and nurse. She is using additional energy when she gets stressed and even more energy to clear her system of the excess fluid.

The best plan right now is to just back off and let her grow. I'll continue to nurse her because she has no issue with that and clearly benefits from the closeness with her mommy. She is also sleeping more in the last few days so we'll give her as much time as she needs to rest and build up her strength. Her weight gain has slowed down due to many of the above factors; for two nights she gained no weight and last night she gained 15 grams. She is 5 pounds and 9 ounces which is still very impressive for her tender age. In fact, some of her preemie outfits are close to being outgrown!

Beth continues to charm all her visitors and nurses. Talk around her crib is always celebratory for she has come a long way. It is highly frustrating for us when we see younger and smaller babies happily sucking on a bottle and some actually going home. The nurses tell us that super-preemies like Beth often have this problem and not to worry. We can't help but be anxious to get her home as we crave a normal family life even though we'll have months and months of round-the-clock feedings. We just have to keep watching, praying and sending her positive energy as her little body and her mind continue to develop. After all, she seems to say with her sleepy eyes, "I'm not actually DUE until May 9!"

Thursday, April 13, 2006

Bottle-Feeding Bradycardia

We had a very scary bradycardia with Beth on Thursday. While I don’t suppose it was anything new for the nurses, it really shook me up. I’ve seen her brady before but this one caught me by surprise with its length and the fact that she turned a definate shade of blue. It all started with a bottle feed.

First off, let me remind all Mom’s to trust their instincts. If I had trusted mine, we might not have had such a scare.

Despite all my efforts to get Beth nursing, she won’t be able to go home until she can feed entirely from a bottle. She also has to consume enough with on-demand feeds meaning that she brings in enough just by following her hunger signals. I’ve since learned that some babies do go home with gavage tubes after the parents have training in how to put them in but we would just as soon not have that complication when Beth is discharged.

Because she is now at 36 gestational weeks, there is a strong urgency for the nurses to get her bottle feeding. Beth doesn’t like the bottle. She sputters and chokes and spits out the nipple. We have tried a few and so far she seems best with the Avent (and the Scandinavian nurse!). Two nights ago another nurse got her to take two feeds so everyone had been optimistic that she had the process figured out.

Much to the nurses insistence ( and despite my reluctance), I tried bottle-feeding her. We did okay for about 15 minutes. She didn’t take in very much but she did have some actual sucking and only seemed irritated toward the end. She turns red, turns her head away and gets splotchy skin – all classic signs of fatigue. I was ready to let her cuddle and the developmental specialist asked if I’d like her to try. She tried a different bottle and had her practice sucking on her finger. After about 15 minutes more of this, Beth abruptly stopped breathing. She turned ashen then blue. Her heart rate dipped to the low 100’s from her usual 150-170. Three times she brought her back up only to have Beth slump back down in her hands and turn ashen again. Out came the bag and fortunately she responded to a little “blow by”. A blow-by is when they take the tube that blows oxygen into the mask and just blow it by her nose so that she isn’t getting it directly into her nostrils but rather just across her upper lip. I guess the shock of the cold air and the extra oxygen concentration aids their system just enough to wake it up.

This one was especially upsetting to me because by now, Beth knows me and looks to me for comfort and protection. During this episode her nurse was holding her behind the neck in a seated position, alternatively rubbing her back and sitting her upright to get things moving. Beth was staring directly at me and the angst was clear. I reached out to grab her hand and she clung on tightly. It was all I could do to maintain my composure but I had to let the nurse do her thing. Again, all were calm but tension did rise considerably.

After she had stabilized which I am sure was much quicker than the eternity it seemed to take, they quickly stripped her down and placed her on my chest so we could kangaroo. Beth didn’t take her eyes off me despite her deep fatigue. Finally she drifted off to sleep and began the familiar squeaks and twitches I’ve grown accustomed to feeling.

Lessons learned: 1) Know your baby and don’t let anyone talk you into something that doesn’t seem right. 2) Babies, especially preemies, move along at their own pace not the schedule we set for them.

That night when I returned for her feeding, the nurses had moved her to the intermediate nursery which is a step closer to the door. They also wanted me to bottle feed. I said I was there to nurse and so I did. After 15 minutes she seemed done with that so I agreed to a little bottle feeding. This time I followed my instinct and when she had had enough, we quit. The nurse even brought over Beth’s nurse from the previous night who had given her two bottles. She was going to help me with the bottle. However, I held fast and when I sensed Beth had had enough, I put the bottle down and let her sleep in my arms. She and I both needed to be free of pressure. We’ve endured enough together and I refuse to rush this process despite everyone’s urgent desire to get her home.

On the PLUS side, she gained another few ounces and is now 5 pounds and 8 ounces.

Wednesday, April 12, 2006

Baths, Gavage Tubes and Weighing

Tonight I arrived just in time to start a host of new tasks with Beth. First off, bath night for baby girls is on Tuesday. Boys and girls get their baths on alternating days. I'm not really sure why. Everything is charted for NICU babies so it is impossible for a baby to be bathed without the next nurse knowing it. In any event, I was fortunate to be able to bathe little Beth. The last time she was to be bathed while I was there her body temperature was too low so we had to settle for a sponge bath. And, she was still in the isolette so it was very difficult to maneuver enough to get her truly clean.

We also weighed her (a whopping 2400 grams or 5 pounds and 5 ounces) and replaced her gavage tube. Beth had another impressive weight gain especially considering that when Daddy visited around 5:00 p.m., she had a GIGANTIC poop. Mike even noted the weight of her poop which was roughly one ounce or 28 grams. Clearly our major concerns are waning when our conversations concern her bowel movements (or lack thereof) and nursing success.

A Gavage Tube

Replacing a gavage tube is an interesting if not ticklish process. The doctor changed Beth's feeding orders to a bulbous feeding rather than the pump feeding she had been receiving. In the past, her milk was loaded into a 2 cc syringe which was mounted into a timed plunger. This is then attached to the end of the tube going through her nose into her stomach.

I had never witnessed the gavage (or nasal gastric ) tube being replaced but assumed it was a painful process. IN reality it isn't painful at all. Rather, it is ticklish and Beth sneezed and squirmed while it was being snaked down to her stomach. The nurse gets an estimated length by measure her nose to her stomach and then just pushes the tube up her nose. She then attaches a syringe at the end and pushes some air into the tube while listening with a stethoscope. Apparently you can hear the air going into the stomach. This took a few tries of pushing the tube in further, inserting air and listening for placement.

The tube had to be replaced with a larger one so the bulbous feeding wouldn't take an hour. When I inquired why the change in orders, I was told that the real reason is so that the baby gets held more since the pump is rather passive and the bulbous feeding requires that someone hold the syringe up. A more important reason seems to be that this is closer to natural nursing although I can't really see the difference between a plunger pushing it in and gravity. Given that Beth is visited very frequently with Mike and I who spend nearly 5-6 hours a day with her, she isn't lacking in personal interaction. Not all parents are as fortunate as we are however. Some live hours away and in other families, both parents are working or have many children who require their attention.

Bath Time
I recall bathing Elliott and always enjoyed playing with him in the water. However, I had forgotten how alarming it can be when a wet naked baby starts to slip from your hands. Fortunately our good nurse coached me through the process again. It is much more difficult for me to grab a hold of Beth in the clamp that our nurse had (she is a good 8 inches taller than I and has much longer fingers). We managed to get her washed and dried without any mishap.

The nurses use a Phisoderm body wash and just squirt it into the water so that there is only one process of scrubbing with no rinse needed. I'll remember this trick for home for it results in a much faster bath. Depending on if Beth likes baths, we'll go the fast, no-rinse route or take a more leisurely bath with suds and fresh rinse water.

A Naked Baby (descreetly edited)
It was a real treat to weigh Beth in her birthday suit and see the little rolls developing on her arms and legs. While she is still just 16 inches long, her round belly can't help but boost one's spirits. The diaper on her rights is a preemie size diaper. She is almost ready for a newborn size. ... a far cry from the bandaid-size diaper she first wore.

Saturday, April 08, 2006

Five Pounds!

These days, the doctor reports are rather mundane. Beth gains weight each day and just registered 2266 grams which is a hair below five pounds. We never thought we'd see this day. And, Elliott never thought his day would come either as he got his first glimpse of Beth through a window in one of the side doors. He hammed it up and thoroughly charmed Beth's nurse who was holding her.

To say he was excited is an understatement. Everyday he asks if I'm bringing Beth home. It might be sooner than later now. She has had no apnea or bradycardia events. She has been off caffeine for 4 days now. If she makes it another 3 days and then is clear of an event, she is good to go home on that factor. The other two factors will be her white blood cell count and getting her to eat.

Beth seems content to take food via the gavage tube. I'm going to the hospital twice a day now and staying 4 hours in the morning if I can. This way I get two feedings in the morning and one at night. So far, she is taking in nothing noticeable via nursing and the bottle feedings have only reached 2 cc's. While the urgency level is rising, I have no doubt she'll just pick it up one day and we'll be on our way!

She is currently at 35 gestational weeks and over 9 weeks post partum.

Tuesday, April 04, 2006

Surprise Mommy! I'm In a Crib!

Yes, it finally happened. Beth graduated to a real crib--just like the cribs that full-term babies get to sleep in when they enter the world.

When I arrived at the nursery for her 8:00 p.m. feeding, Beth's primary nurse had surprised me by dressing her in this adorable outfit and bonnet and moving her to the open crib. As I rounded the corner to her bedside, it took my breath away to see her looking so...normal. This photo shows her almost exactly as I saw her: swaddled in those distinctive hospital blankets with her eyes peering out through purple ruffles. She was wide awake apparently taking in the new view and sounds.

This is the exact moment that I felt secure in her well-being and realized that she would be coming home one day. In fact, it seems she'll be home sooner than we anticipated. While we still have a few hurdles to overcome (she has to be able to nurse or bottle feed, free of bradys for a week and able to stay warm without the heated bed), we will make it home and someday enjoy nighttime feedings, dirty diapers, spit ups and unabashed joy!

Until you experience this whole thing, it is nearly impossible to imagine the significance of this change. Even as parents we've (actually I more than Mike) been tenuous at times unsure if it was safe to take Beth out of the isolette or if it was safe to open the doors and stick our hands inside. The nurses seem to be the ones in charge sometimes and as a parent, you frequently defer to their expertise regarding stimulating a preemie. However, now that she is in the open things have changed. All of a sudden she's just there. She's laying in a warm blanket peering up at you just ready to be plucked from the crib and hugged and loved. Soon she'll be reaching her hands up to us and cooing. I expect there will be cries, too but they'll be oh so sweet. We can't wait to move her to the intermediate nursery where Elliott will be able to see her. The outfit he picked out is ready and waiting for that special day when he'll first see her and notice her wearing the clothes he wanted her to have.

About the Vitals
Her weight gain is astounding (2162 grams or 4 pounds and 13 ounces). Her oxygen saturation and respirations remain stable. Her heart rate is strong and free of bradys. However, she will be discontinuing caffeine on Wednesday so we might experience a few dips in the next weeks.

The doctors are also running more blood tests to determine why her white blood cell count is low. Nothing to be alarmed about, they assure me, but must be investigated to rule out anything but immaturity.

Her nursing progress is very good. She's not excited about a bottle but seems to latch on to me very well. We've got a little more training to help her stay latched on and then build stamina so she can get a full meal in without expending all the calories being consumed simply to get the milk out.

Monday, April 03, 2006

White and Red Blood Cells

Today Beth seemed her normal self: healthy pink color, alert eyes and a happier countenance. I was able to hold her for two hours while she slept peacefully (and her lunch stayed inside this time). I think those shots really upset her system, making her and her tummy rather irritable.

Last night she weighed in at 2120 grams or 4 pounds 11 ounces. Every day a nurse or two comment that she'll soon be in an open crib which will further enhance our ability to take pictures and hold her hand without waking her. The open crib will be quieter, too because sound reverberates inside the closed isolette. I've also discovered studies saying the isolette doors can register a whopping 120 decibels when being closed. Some nurses take an extra effort to hold the latch down to prevent the loud "snap." However, others are less careful and often you can see Beth jump with each snap.

Blood Cell Counts
One of the blood tests (I think called an A&C) measures Beth's production of red blood cells. She was receiving erythropoetin (the hormone that stimulates the production of red blood cells) in a synthetic form called EPO. However, when stimulating the bone marrow to make red blood cells you can sacrifice the production of white blood cells needed for a strong immunity system. Beth's white blood cell count is only 700 and while that is safe in the scrubbed environment of the NICU, it won't fly in the real world. Our goal is to bring her to 1500. While all this is normal for a preemie, it illustrates the delicate balancing act of manipulating mother nature without upsetting the apple cart. Her hematocrit and hemoglobin counts are normal so the doctors feel safe in letting her system reset itself and see if the white blood cell count rises.

Another Eye Exam
She will have another ROP test on Wednesday morning so Beth will have a stressful day. Her eyes were very sensitive last Wednesday and apparently she was quite distressed during the test. This time I'll be there right as the test finishes because while they won't let me inside the NICU while she's being tested, I'll be knocking on the door at 8 a.m. so I can help calm her down.

Sunday, April 02, 2006

Those icky shots!

Yes, even preemies get their shots. Beth received her first round of shots yesterday and while the nurse said she did fine when getting poked and afterwards, today she felt icky. I arrived for her 11 a.m. diaper change/temp/feeding to find her looking so cute in her isolette. We worked on nursing for a bit and she did very well. As I started to settle her in for an hour of holding, she just seemed sensitive and irritable. WHile she didn't have a real brady, her heart rate did dip down to 112 twice and she seemed to be breathing heavily. So, I alerted the nurse that she didn't seem right and put her back in her bed. No sooner than I get her tucked in she promptly spit up the majority of her 11 a.m. feeding.

This is highly unusual for our little girl as she has skated through the digestive development. They tell us that most preemies have some trouble taking food. Clearly the immunizations have her feeling icky. Yes, preemies can have tylenol although I'm not sure how much. The nurse had just given her a dose along with her sodium and various additives. It is possible that was just too much in her tummy.

We changed all her bedding and her clothing and I sat beside her with my hand on her head and fingers clutching her hand. It is interesting that while we were changing everything, the nurse had her on her tummy and turned away from me. Beth was most agitated and then promptly turned her head over my way. I'd like to think she was looking for me because she knew I was there by my familiar hand on her head and my voice. Once she got her head facing my direction she settled down and we shared glances between her fluttering eyelids as she drifted off to sleep. I think she'll feel better with a good nap so we'll try again tonight.

Her weight is up to 2090 grams (over 4 and a half pounds) but she might drop a bit if she keep spitting up. She is still doing fine without the nasal cannula despite feeling crummy.
Can you notice that she has no tape on her left cheek? Her skin is absolutely beautiful to behold.

Saturday, April 01, 2006

Beth Gets a Bath

Daddy was the lucky one today. While I got to visit and hold her for our familiar routine of diaper change/temperature taking and nursing, Daddy stopped in for a night time visit and got to bathe Beth. Was I ever jealous when I found this out.

Preemies are given swaddled baths where their bodies are wrapped up in burrito roll throughout the bath. Each quadrant is washed but gently unwrapping that arm or leg. It is then wrapped back up as soon as it is rinsed. Their hair is washed last. For a sensitive baby like Beth, this is a beautiful way keep her feeling secure during her bath.

Beth is 2050 grams or 4 pounds and 8 ounces. This size is amazing to us. Because she takes her feedings so well, she is gaining weight with abandon. Her fingers are almost triangular because they are so fat at the bottom. She is 42 cm long (16.5 inches) although her head is sooo elongated I would guess she has an extra half inch of cranium! ...most super preemies end up like this because they spend so much time on the their tummies and sides. Our full-term babies sleep on their backs all the time and don't have this problem.

All of her extra nutrients are being removed from her diet because she eats so well. They are removing the iron because she is making her own red blood cells. The EPO is being DC'd (discontinued) and she is no longer getting steriod treatments for her lungs.