Weight Gain

Just thought I'd post a quick update. Angelyn is still doing great. Her most important job right now is to pour all of her energy into growth and weight gain. Over the past week, the docs have increased her feeding volume by 1cc every 12 hours. That seemed really fast to me but they assured me that her body would grow in proportion and she would be able to tolerate it. So now her feeding volume has maxed out at 12ccs (just over 1/3 ounce) until a new order is written to continue increasing the volume. It takes every bit of energy just to digest her food. I have started trying to time my visits around her feeding so that I can hold her at the time the nurses are doing "cares" (aka bugging her) so that when everything is done we can put her back to bed and leave her alone.

The great news is that her body has been growing to meet those demands. The latest word from the NICU is that her weight last night was 1150 grams. That's 2 lbs 8 oz, folks.

2 lbs 8 oz!!!

And just in case you need a little reminder, she started out at 950 grams (2 lbs 1 oz) and had dipped all the way down to 830 grams (1 lb 13.5 oz). So, it goes without saying that now we are celebrating every ounce she gains.

And if you are wondering how I have quickly become so adept with my grams-ounces conversions, I just want to show you this preemie journal that I have started keeping for Angelyn.

It's actually the exact same journal I had for Adam. I was never expecting to own two of this particular book. But when the time came for me to look for updated offerings on the preemie baby book market, there wasn't much out there so I opted for the old standby. It was written by two NICU nurses and has places to log all of the most significant milestones: first tube feeding, feedings all by mouth, weight gain (including conversion chart), all important oxygen therapy graduations, moving to an open crib from the isolette, first skin-to-skin cuddle, sibling visits, surgery (if needed), not to mention this huge one...GOING HOME! In short, I recommend this journal for that special time should you find yourself with a preemie in the NICU.

A very sincere and genuinely concerned 8-year-old in my life melted my heart yesterday with this question, "Emily, what are the chances that your baby is going to die?" I was so grateful to be able to honestly reassure him that right now, the chances of that are not very high. Angelyn is fighting and working so hard, and she has so many people and so much technology around her that will not allow her to stop breathing. Not to mention the many miracles we have already seen to this point that have played a role in preserving her life, and the many prayers and fasting we have felt on her behalf. We know that the Lord is watching over her and is very aware of who she is, her struggles, and her purpose in life, and we are so thankful.

Big Brother

Angelyn is doing MUCH better the last few days. She looked so good during our visit last night, I was very happy. She has a nice pink color, she has just now surpassed her birth weight (if only by a few grams), she is back on feedings (4ccs) and she even opened her eyes a few times while we were there with her. The antibiotics seem to have staved off the bacterial infection and, while she is still having "episodes," they are not as severe or frequent and she currently is handling everything using just the nasal cannula.

That is one of her diapers he is holding.

On Sunday we were told that if we wanted to bring any of Angelyn's siblings to meet her we should plan on doing it that day. Visitation guidelines for the NICU are so strict that siblings age 5-14 can only visit on Sundays from 2-5pm during non-RSV season. We had just assumed that meant that none of our kids would be able to go in. However, Kari NP told me they expected a higher RSV alert starting next week, so if we were going to do it we should do it now.

Fortunately, Peter (being the only sibling age 5-14) happened to be healthy enough to go in.

Here he is waiting to give Angelyn's milk to the nurse.

Getting suited up in sterile garb 3 times his size

His comments were along the lines of, "her arms look like sticks," "she is so little," and "she looks like an old person."

When we first arrived at the NICU we found that they were working on one of Angelyn's IVs that had gone bad (that's the simplified version). They asked us to wait "10-15 minutes" which ended up being 45. The camera being the only thing on hand to entertain us, Weston and Peter made good use of its "special features."

In other news....

Downturn

Yesterday morning I got a phone call from Mollie NP, who told me that Angelyn has been "acting sick," meaning she has been having much more frequent apnea/bradi episodes where she had been doing totally fine with just the nasal cannula on room air up until that point. Dr.G ordered a stop on all feedings and Mollie put her back on the CPAP.

The list of possible suspected culprits includes:
1) Bacterial infection
2) Viral infection
3) PDA open again (I didn't know that was a possibility)
4) Anemia

We talked at length about how they would go about trying to identify the problem and treating her. They already started her on antibiotics, in case of bacterial infection. In case of viral infection, the only thing they can do is treat the symptoms as they appear. Mollie ordered another ECHO scan for her heart. I was present again for this ECHO and starting to envision (read: dread) surgery again. However, the report came back that her pda is still closed. So we crossed that one off the list and breathed a sigh of relief.

With respect to anemia, Mollie had given me a heads up earlier in the week that Angelyn would likely need a blood transfusion soon. She said it is very unlikely that preemies this age get through their NICU stay without one. Apparently, even full-term babies and hence, especially preemies, don't produce red blood cells very efficiently. That, combined with the fact that they are constantly drawing her blood for labs, is a double blow against her Hematocrit levels. Still, they wanted to wait until her Hematocrit actually signified the need for a transfusion and with this current illness, they decided the time had come. Mollie walked me through every detail of the risks associated with blood transfusion and then, since we were on the phone, had me give consent to a third party for verification. I asked her if they felt like the benefits would outweigh the risks (which are statistically very low, but still.....). She said, "absolutely, or we would not even be suggesting it." So, Angelyn received the blood yesterday and so far hasn't had any adverse reaction.

Last night when we were visiting, she continued to have the apnea spells (it is so stressful to watch that monitor and just wait for the numbers to get back within range. Especially when they get close and then drop down again.) They told me if it continued this way they would likely have to put her back on the ventilator tonight (this would be the third time). So I called in early this morning, expecting to hear the confirmation that she had been intubated again. However, Bridgette RN told me that after a while they just suctioned out her nose again and got a ton of mucous (aka crap) out of there. After that, she didn't have any apnea for 4 hours. So, the good news is that she wasn't intubated. They will keep a close eye on her nasal passages and just try to keep them clean. I'm hoping that this is a sign she just has a little cold and we might be able to bide our time until it goes away. So far, all the tests for infection have come back negative (that might be because they were taken as soon as she showed any signs of illness, so they may be premature). They are also going to do a lumbar puncture this morning to see if there is any infection in her spinal fluid.

I probably won't be able to hold her again until this illness is resolved. We are going back in for a visit this morning and may have further updates then. Stay tuned and please keep us in your prayers! Thank you, friends!

post-edit:
This morning's visit yielded mostly good news. The infection has been identified as Coagulase-negative Staph, the most benign and highly treatable on the spectrum of staphylococcus. I've included this excerpt from wiki for your reading pleasure:

• S. epidermidis, a coagulase-negative staphylococcus species, is a commensal of the skin, but can cause severe infections in immune-suppressed patients and those with central venous catheters.

The reason this is such good news is because it is bacterial (not viral) and she has already been put on antibiotics, which should clean it up pretty nicely. She has already been placed back on feedings (in smaller amounts) and maybe will stay on the CPAP for another 24 hours or so. Her apnea spells have subsided and I should be able to hold her tonight. Also, Peter will get to go in to the NICU and meet her today. This is probably the only time he will be allowed in, as they are expecting high-RSV alerts to begin soon, at which point no one under 18 is allowed to visit.

The Stars Have Aligned

Finally, after what feels like weeks (it was really only 3.5 days) of waiting, baby and mom were both ready for kangaroo care at the same time! We were a little nervous we would miss the boat again last night, because when we arrived at the hospital, Angelyn was having a series of more frequent apnea/bradicardia episodes. But the nurse (Andrea) was hopeful that it was just because her medication was due, and that if we waited 30 minutes or so, she would pull out of it.

I love this photo of her with her little mouth open. So sweet.

Fortunately, she did pull out of it and we got the green light to go ahead. Andrea helped us get everything situated. She brought the baby over to me along with the enormous handful of wires and tubes trailing behind. She brought warm blankets to help make sure the baby wouldn't freeze outside of the isolette.

She is so so small, I still can hardly believe it myself. She sat cuddled up with her bum and legs all nestled into the palm of my right hand. We rocked and sang lullabies. She lasted about 20 minutes before she started having episodes again. The order was written that I could hold her up to 60 minutes as long as she was tolerating it. But, I'm satisfied with the 20 we got. Weston and I thought even that was pretty good for the first try.
She is slowly gaining weight. Last night we were told that she is almost back up to her birthweight. (Now an even 2 lbs.) Her feeding amounts are steadily increasing and she is tolerating them well. She is already up to 4ccs every 3 hours, which seems like a huge leap to us, in only 2 days.
Her skin has grown into a nice, soft pink color. I was looking at pictures of her from the first day and noticing the difference. Even 2 weeks ago her skin was a much deeper red and seemingly more translucent. She really is a fighter. We have been so blessed and we thank you again for all of your thoughts and prayers.

No Dice

Well, for those of you checking back to see how the first day of kangaroo care went, I'm sorry to have to disappoint you but it didn't happen. There was some concern about whether or not our family is really clean from the stomach flu that so mercilessly hit us last week. It came back for a second round. In talking it over with the nurse (Sammy), she suggested we don't even come in.
So, now we have to wait until 24 hours after we are absolutely sure that EVERYONE is clean before we can go visit Angelyn again. I know it's all for the best, and especially important that she doesn't contract this virus. So, for that reason I am reconciled to staying away. It's just frustrating and I have to say, I'm concerned that this will be an issue for the next three months.

So....Your thoughts on quarantine???

We are just headed into Fall. All sorts of nasty stuff going around. Short of keeping us ALL home 24/7 (which is unrealistic), I don't really know how to protect us enough so that I will be able to visit Angelyn on a regular basis. When we really start into Kangaroo care and feedings, I want to be able to visit her every day, if not twice a day. The Nurse Practitioner (Molly) told me that now is the time to start making sure that we start teaching good, REAL hand-washing and making it part of our family culture, in preparation for the baby's homecoming. And I agree with that. I just don't know if it is going to work.

Memories

Angelyn is still doing well. The last two times I have visited her she has been on the nasal canula. It is nice for me to be able to actually see most of her face and head now that the CPAP is gone. She does have a nice dosage of blond hair. She fits right in with the family. The nurses will sometimes try to stick a bow on her head but it doesn't stay on very long, due to all the humidity they are pumping through her isolette.

The nurse told me today that Dr. G has issued an order for me to hold her one time, which means that I will be able to hold her TOMORROW!! I could have held her today but I wanted to wait until Weston could be with me and....to tell you the truth, I'm a little scared. She is just so tiny and so fragile that the thought of holding her without being mentally prepared was a little daunting to me. But tomorrow is the big day, if all goes well and she remains stable between now and then.

Yesterday I had the kids snuggled up in bed with me watching some old family videos. I wanted to show them the video I made of Adam's journey through the NICU, to help them come closer to grasping what is going on. I thought I would post it here, just for kicks. It struck me, as I was watching, that there are pics of me holding Adam while still in my hospital gown. It's amazing that he was big enough for me to hold (almost 2 lbs bigger than she is) even the day after he was born. This will probably be a re-run for some of you. You can take it or leave it. This was my maiden voyage with windows movie maker so the captions are plentiful and sometimes dumb. But, you get the point. Hope you enjoy.
~Em

Fingers Crossed

Weston and I went to visit Angelyn this morning and had a thorough update from Dr. Gerstmann, her fantastic neonatalogist. He basically told us that Angelyn has overcome the two biggest hurdles (heart and brain) for preemies at this age. There will be more obstacles coming in the next few weeks; namely eyesight and establishing tube feeding. He strikes me as someone who doesn't like to sugar-coat anything...and even when things are looking up, he still reserves blanket statements about how everything is going to be fine for....never. He crossed his fingers a lot during our chat, which I suppose for him is a good sign that things are looking good. Anyway, since I can't think of a better way, I am just going to tell you in list format what we learned:

Heart- Now that Angelyn's PDA is closed, her heart structure is closer to that of a newborn than of a fetus. She still has fetal ventricles that open and close between the heart chambers themselves, but apparently those will close much more easily on their own. Again, now that the PDA is closed, I asked Dr. Gerstmann how much follow-up evaluation will be done on her heart. I was very surprised when he told me the recommendation from Dr. Judd, the cardiologist, was that we do a follow-up heart scan when she is 6 MONTHS OLD!! To me that speaks volumes about how confident they are that her heart is stable.

Brain-They performed a second brain ultrasound which came back perfect, as did her first. Dr. Gerstmann said the first two brain scans are the ones that determine the most. So they are confident that her brain is going to be fine. (By way of comparison, Adam's head ultrasounds were not so pristine. He had a very small area with Peri-Ventricular Leukomalacia (PVL) which is basically brain tissue that was damaged. He had to have a follow-up MRI at about 3 months and we just had to watch him carefully for physical developmental delay which, fortunately, was never an issue.)

Respiratory-Her lungs are still very premature. She has been on the nasal CPAP since she came off the ventilator on Thursday. She did have a pretty rough night last night. Since she has so many tubes and wires going through her facial orifices, they get irritated and have been creating a lot of mucous (and even some blood clotting). So they have been watching her nose and trying to keep it clean, always swabbing for bacterial infection. Dr. G said they will probably move from the nasal CPAP to a high-flow nasal canula instead, hoping it will be a little less irritating.

You can see the change here. She is on the nasal canula, not the CPAP which looks like an elephant trunk. (Photo courtesy of Grandpa Richards)

Feeding- A happy milestone for me, Dr. G told me that they have started giving Angelyn my milk! She takes only 1cc (less than 1/3 of an ounce) every 3 hours through the feeding tube to her stomach. There isn't much I can do to help her right now (I can't touch her or hold her), but since I have become a human dairy farm, I feel like I am part of the team. I'm the only one that can provide this for her and it makes me happy to know that she is taking it. They had me package the colostrum in syringes at first, so they could defrost it in the smallest necessary amounts. I think that is so clever, and something we didn't do with Adam. Another improvement since last time we did this; they print up labels for me with my barcode on it, so when they give her the milk,they scan it and confirm that the right milk is going to the right baby. Technology these days! Establishing tube feeding is the goal over the next 3 weeks, by which time if she is stable enough (fingers crossed) I will be able to hold her and start kangaroo care.

Well, that is probably more detail than you wanted. But I've had many of you tell me you are watching her progress on the blog, so I thought I would err on the side of thoroughness. I am home from the hospital now, and feeling better. I'm right at that stage of needing to remind myself to stay in bed. Since I feel better I think I am able to do more. Then the soreness hits me and I realize I've made a mistake.

Thank you again for all of the prayers and fasting on our behalf. We are so grateful and know that your support and prayers are making a big difference.