Monday, February 27, 2006

First Outfit and Rooting


Despite her many "events" -- episodes of apnea and bradycardia -- Beth is doing quite well. She has gained enough weight to put her over the magic 1000 gram mark. She now weighs 1070 grams which is about 2 pounds and 5 ounces. She is still breathing on the nasal cannula which delivers oxygen. The doctors are concerned about her frequent events and everyday say she might have to go back on the CPAP machine. However, the respiratory therapists and nurses seem unconcerned by the frequency and tell us not to worry. Each time I show up at the NICU, she is still comfortably connected to the cannula. It is amazing how much more relaxed she is not having a blower connected to her nose by a tight strap (i.e. a CPAP). It is my guess that as long as the respiratory therapists whose job it is to make sure she is breathing, feel she is alright, then the doctors go along with it.

On Friday (see the photo just before this blog entry), I was able to hold her again. This was the first time without the CPAP and she was clearly so much more comfortable. She snuggled right onto my chest just below my chin proceedededed to fall fast asleep. Her fingers again worked up and down. Her fingernails are getting so long that they actually can scratch my skin. I didnĂ‚’t mind a bit. I think I have a hairbrush with fibers that aren't too much smaller than her fingers.

I can hold her for about 20 minutes before she stops breathing. It seems that she falls so deep into sleep that her brain really shuts off and she begins an event. Sometimes she pulls herself out of it but on Friday, she actually started to turn blue. First around her eye sockets, then the rest of her face. By this time, I'm not just softly telling her to breathe, I've stopped breathing and my voice gets a little more urgent. The nurses however, are unflappable. They calmly have me rub her back. "Firmly now, right over her spin," they say. Then they turn up her oxygen level and she gradually starts to come back. Thankfully I don't panic anymore and while I know my heart rate accelerates in direct proportion to her deceleration, I manage to hold it together.

This should end in a few weeks but she currently has 6-8 events each day. As long as the numbers go down, we are moving in the right direction.

Kangaroo Care
I also spent quite some time with the developmental specialist who helped me pick Beth up, get her out of the isolette and moved onto my chest for kangaroo care. http://www.umanitoba.ca/womens_health/kangaroo.htm
We are working on a three stage process because it is easy for preemies to get dizzy and disoriented when changing positions. It also seems that Beth is very sensitive to external stimuli, preferring the dark and quiet cocoon of her isolette. Thus, the gradual movement to my chest is important to keep her calm. It seems that 20 minutes is her limit. For the last two sessions, she has dropped her respirations and heart rate necessitating her early return to her isolette.

Cute Little Outfits
We have started dressing her in cute pink outfits but even the tiniest preemie clothes swim on her diminutive arms. The development specialist today advised against dressing her or at least that we use only small jacket-style outfits that have minimal closures. These are not easy to find!

On Sunday, Elliott and I went to the baby store to find clothes for her and he was such a cute big brother. He kept grabbing toy after toy and all sorts of clothes he wanted her to have. He would have filled up the entire cart with gifts for the baby and had no interest in toys for himself. He picked out bottles, a drying rack, a new crib sheet and a bright red pair of socks complete with lace around the edges! Elliott is such a wonderful big brother and it will be our greatest joy to see them grow up together.

Beth is starting to look like a little baby girl compoccasionaln occassional smile (not a real smile but Mommy and Daddy see them as such). She also began rooting last night. Daddy and I had a wonderful time watching her smile and purse her lips in that familiar way. This was the first time I felt she looked strong and healthy. She was so relaxed for the hour that we observed her, neither one of us wanted to bother her. Alas, at 9p.m. we had to disturb her for a clean diaper, temperature and weighing.

Tuesday, February 21, 2006

Pictures of Beth

Back on the CPAP


Beth was moved to the CPAP on Saturday and is doing very well. Her O2 settings have ranged from 21% to 30% and she does a lot of breathing on her own. Her feedings have been increased to 19 mls every three hours (imagine eating 24 calories every 3 hours!). Her tiny body is responding well to the added food and as of Sunday, she weighed 980 grams or 2 pounds and 3 ounces.

These photos show me holding Beth (our second time in her life) on Monday 2/20. Daddy and I went to the hospital together and were surprised when the nurse said we could hold her. Again, Beth was busy as ever. We had a little more freedom without the ventilator so I could let her move her head. Her right hand is tucked under the gown and she was busy working her fingers across my skin. I can still feel her fingers drumming and almost stroking me. I held her left hand and you can see her eyes opening up.

Putting her back was a bit of an adventure. I changed her diaper and she was not happy about it. Daddy and I were treated to her surprisingly loud cry. She worked herself up into a tizzy again and stopped breathing for a bit (actually twice). However, this time a little rub on her back brought her back (whew).

We spent the rest of the hour holding her head while she firmly grasped our thumb (Daddy and I alternated). She took quite a while to calm down. In fact, the nurse across the aisle could her her crying through the isolette. Her comment again was that it is encouraging to hear such a strong cry (try being the mommy or daddy who can't just pick her up to comfort her though).

We are immensely thankful that she is doing so well but can't let our guard down for a minute. There are still so many delicacies in this process. We are comforted by faith in God, her little Angel Julianne, and the expert and loving care of the nurses and doctors.

Friday, February 17, 2006

She's a Head-Turner

Our little Beth has proven to be feisty in the past but today took the cake. Twice while I was there, she turned her head to the opposite side despite being on her tummy and with a ventilator tube down her throat! How? The tube is tethered so there is no extra play so Beth just flips over it somehow so she is crossways in the isolette. Once this cut off the air flow. The second time she was all cockeyed but managed to get enough air.

The respiratory therapist said "this is a sure sign she wants off!". The doctor had already told us they would try her on the CPAP machine again tomorrow since the ventilator tubing would have to be changed anyway. Let's hope and pray that she is strong enough this time to stay on the CPAP. Last time she just pooped out.

Regarding the fluid
There are distinct advantages to having Multiple doctors watching over your baby. One doctor surmised that the fluid in her lungs is due to an infection so he ordered a culture (better safe than to miss something). However, her other two doctors and the nurses think it may just be fluid accumulating because of the ventilator and extra breast milk. They are prescribing diuretics to help her get rid of the fluid and also hope that the CPAP machine will help clear things up.

The healthy mature lung that isn't intubated coughs up any fluid that collects in the lung tissue. Usually your epiglottis (http://www.innerbody.com/text/dige02.html) prevents fluid from going into the lungs. When intubated, the epiglottis is held open so the tube can "vent" the lungs with air. Add to this the additional pressure to help hold the lung sacks open, and you have a prime opportunity to collect fluid and not be able to cough it out. The respiratory therapists continually pull out the additional moisture but a good cough also gets it out. So, Beth might be simply accumulating fluid because of the ventilator.

Let's hope that the CPAP and diruetics will eliminate this collection of fluid and we'll find her negative for any infection.

Up in Weight
She has reached 930 grams! Some of this may be water but we can be sure that part of it is real weight. She is almost on full feedings and will receive additional calories (powder added to her breast milk) starting tomorrow (Saturday). She will also receive oral diuretics rather than IV diuretics once on a full tummy.

Good Days
Beth has had a few good days of late and this has helped our confidence greatly. Elliott picked out a cute crib toy for her and asks about her all the time. He still can't understand if she is in Mommy's tummy or in the hospital but he is clearly excited to meet her. He has a real love for babies and seems to connect with them so easily.

Thank you for your prayers and positive thoughts. Today's prayer request is for her to be successful on the CPAP tomorrow (Saturday). That means she can't get all goofy on us and fight the nurses constantly. When she does this, she works herself up and gets too tired to breathe. She needs to stay calm and conserve her energy.

Wednesday, February 15, 2006

Fluid in Lungs

Beth is accumulating fluid in her lungs which could be the result of a blood transfusion and extra fluids in her IV or an infection. They are running some cultures but they will take 7-10 days to return. Her CO2 levels keep rising (not good) but can be controlled by increasing oxygen levels and pressure. TO this point she has been on the ventilator but receiving room oxygen at around 21 percent. Yesterday, the O2 was occasionally increased to 35 percent.

On the good side, she is tolerating her feeds very well and has been bumped up again (after the short hold a few days ago) to 8 mls every 3 hours. Her weight is also up but that is likely due to the extra fluid and blood transfusion.

One interesting note. Beth's blood type is O+ (like her Daddy's). I have O- which is considered the universal blood type. We inquired about donating blood directly but one of the nurses advised against it. Why? Apparently if you donate blood directly to a person, should the need arise for donating organs, the blood donor cannot donate organs should they be needed later. I will investigate this more but thought it interesting.

Tuesday, February 14, 2006

880 Grams

Yesterday we had one episode of bradycardia. Again, this scared me but she was stable through the rest of the day. Mike found out that she had gained a few grams and is now above her birth weight ...born at 879 grams and now 880. While this might be water or a meal still in her tummy, each gram is significant and is going in the right direction.

Here billirubin levels are good so no UV lights for a few days. Her vent settings must be increased a bit because she is having trouble venting off the CO2. Her nurse told me that she may not be using the depths of her lungs for exchange so they increase the pressure a bit to help get those working. Again, the goal is to wean her off the ventilator ASAP because of the potential for lung damage.

She seemed much more comfortable yesterday and her color is good. Thank goodness our sweet (and rambunctious) Elliott keeps us distracted and focused on living.

Sunday, February 12, 2006

Mom's First Hold


Sunday the 12th was an amazing day because I was able to hold Beth for the first time. In the photo her eyes are closed but they were wide open almost the entire time. I have never seen her so alert.

I'll never forget this moment. Her head is about the size of tennis ball. I so vividly remember holding Elliott right after his birth. To have this joy again is beyond description. She is so delicate yet so real. Her tiny right hand kept opening and closing as she grasped for anything within her reach. I tried to snuggle her in and hold her head and arms still. I could wrap one hand around her head and right arm. Those little fingers never quit squirming and each one moved independently with seemingly deliberate intent. Each detail of her body is complete and perfect but oh, so tiny.

Saturday, February 11, 2006

Back on the Ventilator

Beth had to be put back on the ventilator because of so many episodes of apnea and bradycardia (see 2/10 post). It is very scary to watch her stop breathing and her heart rate decrease. The doctors and nurses assure me this is normal for such a young age. Her poor body is just so tired from trying to breathe.

The good news is that her white and red blood cell count remain normal indicating she has no infection or blood problems. They held her food for a day and put her back on IV nutrition to give her bowels a chance to rest. One of the nurses (the angel who managed to get her PIC line in with one needle stick -- I'm so thankful for that), says not be alarmed if she gets two or three more tries on the CPAP before being strong enough to stay on it.

She is a real fighter but now we need her to relax a bit. Pray for her lungs and heart and that she will fight us a little less. She needs to sleep, not fight the nurses.

You could also pray for my strength as I often feel too scared to function. But I spend as much time with her each day as I dare. Elliott needs me and I need as much rest as possible to recuperate. We'll make it but are relying on God to help us all.

Friday, February 10, 2006

Early Days at the NICU


Today brought its share of joy and concerns. When I arrived at the NICU, Beth was lying on her side and comfortably sucking on a pacifier. It was so wonderful to hear a slurp sound and watch her little lips rhythmically pull in comfort. Her hand had also been resplinted so it was a little more comfortable (the left hand is splinted so she can’t bend her arm and cut off the IV line).

I held her hands for at least an hour and she seemed quite content with skin contact. That ended, however when she had a lung treatment and we changed her diaper…

Beth is feisty, as I relayed in the first blog. Her feistiness sometimes gets her into trouble as she fights just about everything the nurses and doctors do. She was already mad with the lung treatment and then we changed her diaper (nice big mess for such a small girl) and turned her over. In this process she got quite worked up and after I got her calmed down, she stopped breathing and even experienced a brief drop in heart rate.

They tell me this is common and I’ve seen other babies in the NICU go through the episodes quite frequently. However, nothing prepares a mom for seeing her own child stop breathing. It only takes a little rubbing on her back to restart the engines but it really rattles my nerves. It seems that the more annoyed she is, she revs up her heart rate and then shuts down which causes the apnea and bradycardia.

Beth clearly likes to be swaddled but we haven’t been able to do so because of the UV lights shining on her skin. The nurse, however, suggested putting a special phototherapy blanket on her skin so that we could wrap her up in the snuggly. It worked; by the time I left the NICU, she had calmed down and was finally getting some rest.

On another positive note, she has been tolerating her feeds and is now up to 6 cc’s every 3 hours.

For a great synopsis of preemie care, go to this site: http://www.kidshealth.org/parent/system/ill/nicu_diagnoses.html

Thursday, February 09, 2006




This is a synopsis of how Beth came into the world, far too early on January 31.

On December 11, I was admitted to the hospital for early labor – I was carrying twin girls. Despite the best efforts of our excellent OB doctor, we delivered one of the twins, Julianne, on December 16 but she did not survive as she was only 19 weeks gestational age. I was heavily medicated with Magnesium Sulfate and kept in the hospital on bed rest to try saving our other baby. Good or bad, I kept her inside as long as my body would allow and "Beth" was delivered on 1/31 at 26 weeks gestational age.

Beth was born at 1 pound and 15 ounces (about 869 grams) and immediately showed us she was a good fighter. She was immediately admitted to the NIC (Neonatal Intensive Care Unit) at Mercy San Juan Hospital where she has received excellent care and lots of love from the nurses, respiratory therapists, doctors and host of other skilled staff. Babies of this age have pretty good changes for survival. We are hopeful that she is of the "fighting Nicole-women spirit"

Beth underwent a small surgery last Friday where they closed a small vein leading away from the heart. PDA is a common condition in premature babies where the ductus arteriosus (that connects the aorta and the pulmonary artery) does not close after birth. Once closed, her blood would route the correct direction and she would have better lung function (among other improvements).

The PDA surgery was successful. She was also given a PIC line which would allow injections to enter a larger vein rather than require constant changing of IV lines. (Mom also had a PIC line inserted in her arm on December 20.) Fortunately the nurse got the PIC line inserted with one try (seems amazing to me given how small her veins are).

Recent Developments
Beth originally was placed on a ventilator that breathed for her. However she showed such good progress after the PDA surgery, they removed her and put her on a CPAP machine on 2/8 (http://www.webmd.com/hw/sleep_disorders/hw48752.asp). While I was visiting on the 8th, she experienced a brief apnea and stopped breathing. No panic among the staff, however as most babies have this because their immature brains forget to breathe. How do they treat it?? Caffeine! For her entire first day on the CPAP machine, she had 4 apnea episodes which they tell us not at all alarming. They increased her oxygen a bit and found that she is more comfortable and breathes easier on her tummy.

Beth spends many hours under UV lights to counteract bilirubin buildup (also normal for many babies, even full-termers). This is an indication that the liver can’t keep up with demand. Not alarming but you’ll notice many photos are blue from the UV lights.

She started receiving breast milk a few days ago and so far is tolerating it well. Before every feeding, they actually siphon the remaining contents back out of her feeding tube (which goes through her mouth into her stomach) to see how well she has digested her food. So far, she digests most of her food so today was increased to 4 cc’s every 3 hours. Occasionally they hold back some if she hasn’t digested the previous meal. But we feel fortunate that she is doing so well.

Her weight had dropped to 810 grams but she has rebounded to 860 as of today. Some of this might be additional fluids and extra weight from a recent blood transfusion. However, we are also encouraged by this sign.

About Beth’s Personality
It is clear that Beth is a feisty little girl. Just today I watched her lift her entire torso off the bedding – twice! I have never seen a full-term baby do this until they start trying to crawl. I’m sure it is easier for her given that she weighs less than two pounds but the nurses tell us that she is clearly a strong one and quite alert.

As additional testament to her strength, when one of her nurses put an IV in her arm for a blood transfusion, she had to splint her arm and pin the splint down onto the bedding because she kept folding up her arm and cutting off the blood flow. I suppose she did get her feisty nature from me but Daddy is known for his strength too.

I heard her cry for the first time yesterday as this was the first day without a tube down her throat. It was a wonderful sound but also unsettling because we can’t pick her up and comfort her. Instead we’ve found that she likes to hold onto a finger while we help hold her legs underneath her body. She also seems to respond to a gentle, rhythmic push against her feet. It must be quite disconcerting to go from the cramped space of the womb to the wide open world.

Future Blogs
In other blogs, I’ll write about the miracle of getting from 19 weeks to 26 weeks. I can’t thank my OB, Dr. C., enough for the amazing work he did to save Beth. I spend 4 weeks at Mercy Folsom Hospital before moving to Mercy San Juan under the care of Dr. H. I also received excellent care at MSJ which enabled me to make it another 2 ½ weeks.

This entire process is a miracle, both sad and joyous. We will never forget our baby Julianne and the tears still flow freely when I think of her. She is a special angel watching over all of us and we’ll never forget feeling her kicks or that one fleeting moment we were able to hold her.

Please keep Beth in your prayers and send her positive energy and strength.