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.

Great News

I just got a call from the nurse practitioner. They already did another ECHO and found the baby's PDA is closed!! I am so relieved and happy and thankful. She didn't even need the extra doses of medication. She is off the ventilator again and hopefully won't have such a hard time sustaining her breath. Thank you, friends!!!

More Prayers Needed

Well, this journey through the NICU is likely to be a two-steps-forward-one-step-back for the next couple of months. Remember that PDA blood vessel I told you about? The first heart scan showed that it was open and still very large. They gave Angelyn one round of medication (3 doses 12 hours apart) to try to help close it off.

I was lucky enough to be in the NICU when the cardiology tech came to do the follow-up study (called an ECHO scan). He allowed me to watch and patiently answered my questions. It was amazing. I continue to be amazed at the things modern medicine has achieved that enable us to keep preemies alive. I feel like I am mooching off of the hard work and dedicated study of other people. It is costing a fortune, and it should. I think anyone who has researched enough to contribute to this process deserves to be paid a LOT of money.

The ultrasound showed her heart pumping well. It also showed her PDA vessel to be smaller, a good indication that the medicine has helped. Unfortunately it is still open with blood passing freely. So, the plan now is to give her another round of meds (possibly with two extra doses if the docs think it's worth a try, for a total of 5) and to re-evaluate on Friday. If the PDA is still not closed, or looking like it is not going to close, they will start talking about having it closed via surgery. In which case, they will have to fly her to St. Marks in Salt Lake where she will stay for the rest of her NICU life.

After the heart scan, later that night, I got a call from the Nurse Practitioner. She told me that after I left, Angelyn started having more apnea spells; deeper and longer ones that she wasn't able to pull herself out of. They decided they needed to put her back on the ventilator. Not considered a major setback, but a minor one. She will probably stay on the ventilator until her PDA is closed. Her body is having to work extra hard to be expected to use her lungs as a newborn, yet pumping her blood with a fetal heart.

I feel like we are at one of those (many) critical crossroads. In the next 24-36 hours she needs to respond to the medication well enough to convince the docs she can do it without surgery.
I know all things are in the Lord's hands and He can do all things. Please continue to pray with us.
~Emily

Preemie Update -- Your FAQ's Answered!

How is Angelyn doing?

The nurses always tell me she is doing great. She tolerates the CPAP (one step down from the ventilator) pretty well most of the time. Not that that means she's out of the woods. The doc is worried about the blood vessel present in unborn fetuses whose purpose it is to bypass the lungs. (Google Patent Ductus Arteriosis). When babies go full term, that blood vessel constricts and disappears. In preemies they have to watch it and give meds to help make sure it doesn’t reflux blood back into the lungs. Apparently her heart scan shows that hers is exceptionally large. When I asked the neonatologist if he was worried about it, he said “yes.” When asked if he was surprised about it, he said, “no.” Hopefully she will respond to the meds that treat it. We will have an update on her response to the medicine later tonight. He's worried because this NICU technically only accepts 28-weekers and above, simply because they don't have quite as immediate access to specialists should the need for surgery arise.

How early was she and how much does she weigh?

She was born at 27.5 weeks. That’s about 12 weeks early….or for those of you on the 9-month plan, she was 3 months early. She weighed in at 2 lbs 1 oz.

How long will she have to stay in the hospital?

Probably until close to her due-date (Jan 5). It all depends on how well she does. We could bring her home late December or early January.

How early did Adam come? Is all of this territory you have traversed before?

Angelyn is 2.5 weeks earlier than Adam was. He was born at 30 weeks. It is amazing how much my perspective has changed. Now I think Adam was a big baby and we would have been so thrilled if Angelyn had made it even to 30 weeks. The neonatologist was expressing to me today that the road with Angelyn will be different. She will have a much different set of challenges and complications because of that 2.5 week difference. However, one advantage is that with Angelyn I had time in the hospital to get all the treatments that give the preemies a boost before they come. I did not have time for those treatments with Adam. So, thanks to the steroids, her lungs are doing fantastic already (she is off the ventilator) and thanks to that horrible 48 hour magnesium drip, her head ultrasound came back completely clean.

Why do you have so much difficulty carrying babies full-term?

I have an abnormal uterus. Some call it “bi-cornuate” some call it “septated.” Basically, when the uterus forms, it starts out as two separate tubes which are supposed to fuse and become one, making the uterus a pear shape. Mine didn’t fuse all the way. So my uterus is a heart shape and has a wall that extends halfway down the middle. This wall is called the septum and it is less vascular than the actual uterine wall. If and when the placenta decides to try to implant on the septum, the risk for placental abruption skyrockets. Placental abruption (when the placenta tears away from the uterine wall) was the cause of both of my premature deliveries. It is extremely dangerous and can cause fatality for both mother and child. Modern medicine is truly a miracle and I am so grateful we are all still alive.

How are you feeling?

I am feeling much better. My arms look absolutely dreadful from all of those failed IV and blood draw attempts. I look like I’ve been either beat up or a heroine addict. My incision will be sore for a while but I am so grateful to be on track for a full and complete recovery.

How would you rate your pain on a scale of 1-10? “Say 8! Say 8!”

It has leveled out at about a 4 or 5.

How are the kids handling everything?

The kids are doing great! I miss them much more than they miss me. They have been to visit me twice and they seem to be having a fantastic time with all of their cousins and friends. They have minimal comprehension of what is going on. Peter knows we have another early baby and asked to see her. It is very likely that they will not be able to visit her in the NICU at all. I was nervous when they came to visit me last week that they would be sad and scared. I tried to present myself as normal-looking as possible. When they came, I was relieved. They didn’t seem too sad. Yet they were affectionate and told me they miss me and love me.

What can I do to help?

We have been blessed by so many willing, helping hands and we thank you from the bottom of our hearts! We are grateful to be in UT with so much family around, and our ward has really come forward with so many offers for help. If you are not close enough to do anything but pray, PLEASE continue. We have felt the power of your prayers so much through the course of this little life experience. We came close to delivering the baby even a week earlier but we felt that, as a result of the many prayers offered in our behalf, things began to stabilize and we got almost a full extra week of gestation time on hospital bed rest. (My doctor gave me this formula: every day in utero counts as two in the NICU). So, please know that your prayers are needed, felt, and appreciated. The Lord has blessed us so much up to this point and we are still just trying to trust Him and hope and pray for a good outcome. Truly, if He blesses us with a good outcome then it doesn’t matter what we have to wade through to get there.