Hyrum and the NICU: More sweet sister visits

Hyrum and the NICU: Day 13, September 23, 2014 - First time the girls got to hold Hyrum!

"Sep 23: Update from day 13 (won't get to the hospital til later tonight): hyrum is doing well. He is such a miracle! We are feeling so blessed to have him here and his progress has truly been miraculous so far. He got his picc line out last night and is officially off all IV nutrition. He is just getting his feeds through his feeding tube. That means a lot fewer lines and wires for him- hooray! He is up to 2 lbs 6 oz. they are still increasing his feeds and he has almost reached the goal they set for him for his current weight. Tonight, I think he'll have his first tub bath! Last night he had his first evaluation with the developmental nursing team and we'll see what they are thinking so far about him. Developmental issues are things that will probably reveal themselves over time. We'll get their report today. Otherwise, We are pretty much just waiting til our ultrasound on Thursday to check his brain bleed. Other than that, enjoying skin to skin time, watching our little man have some fun periods of alertness and interaction, and getting in a few last visits with sisters before sick season restrictions. Thanks for all the prayers- we are feeling them. Grateful for this little guy and also for the power of the priesthood. We know his amazing progress is a result of the blessing he received after he was born."

Hyrum and the NICU: Day 8, September 18, 2014

"Sep 18- Day 8 update: Well a little bit of a cloud to rain on our parade- hyrum had a routine ultrasound this morning to check for bleeding in brain. Just talked with doc about results and he has a grade 2 bleed on the right side. They are graded 1-4, with 4 being the most severe. Doc said it is very good that the bleed is only on one side and that she would classify it as good news. Seems to us like good news would be no bleed.... But... Anyways, plan is to do another ultrasound in a week, at which point they would be hoping to see the bleeding resolving. She said this type of bleed is not likely to add any developmental problems- anything that did pop up would just be a result of prematurity in general. So, there's that. Not sure what to think/feel. Doctor seemed ok about it, but it makes me nervous. Other than that, he had a good night and looks good. Still doing great with his breathing and they'll check another CBC in a few days. He got his og tube replaced with NG tube and he was such a good boy and he was very good for his bath too whih the nurse said most babies hate (bed sponge bath). So he seems to be a strong little guy and quite a trooper. Proud of him. :) we had a little over two hours of skin to skin time and that is good stuff."

Hyrum and the NICU: Day 7/8, September 17 and 18, 2014

Hyrum chilling in his pad. They would cocoon him with blankets and pads and these teeny tiny bean bag "snakes" to try and replicate the cozy, tight womb environment he should have still been in. Hyrum loved snuggling his bean bags! :)

Lots of skin to skin every day.

I think it is incredible how he would try and look at us and focus on us. Pretty much absolutely melted me every time.

That's a happy boy loving some good snuggles!

Hyrum started to be a little more alert for short periods at the end of his first week of life outside the womb. We loved seeing those little eyes!

"Sep 17/18- Finally have a minute here while I'm pumping! No labs back yet for me yet. Sometime in te next week probably. Hyrum had a good day yesterday. Weight held steady at 2 lbs 5 oz, breathing looked great, bili was down so he was able to get off the lights, they finished weaning humidity in his incubator, and platelet levels held steady in a nice range. Docs were happy. Getting to the hospital here in a bit and we'll see where things are today. Today he gets his first bath! Yesterday girls got to see him for the first time and touch him. They were both very excited to see him- Elena especially. She pretty much stayed by his side the whole half hour we were there. And he gave her a few sleepy smiles. :) we found out they are closing NICU down to all kids under 13- even siblings a lot earlier than planned- OCT 1 because of sick season and so we are trying to pack visits in with the girls while we can. The next time they'll be able to see him will be when he comes home in November or December!"

"Scrunchy face, but there he is near the end of his bath with absolutely nothing on his face!! Took the og tube out and replaced with an NG tube. That way he can suck binky better and such. Bath was really neat. He was very interactive. :)"

Hyrum and the NICU: Day 6, September 16, 2014 - Eric's first time holding Hyrum!

"September 16- Daddy and son!! First time Eric's gotten to hold hyrum. Sure melts my heart. It was so funny because hyrum was a little fussy and squirmy all before but he quieted down immediately after Eric started holding him. He's just laying super still with his eyes open. Happy camper snuggling with dad. I love these guys! Told you he was happy!! First smile!! :)"

"Day 6 update: quiet day for the most part. He had a good night and all of his labs aren't due til tomorrow. Of note- still under the bili lights, still breathing like a champ, and weight is 2 lbs 3oz. He has now had 7 "bradys" which are those hard dips in heart rate. They aren't concerned at this point because there haven't been too many and also because they have self corrected. So they'll just watch them for now. Makes our hears race each time though. On the lighter side- I was changing his diaper and as I reached for the new diaper, he peed all over the place. Such a boy. :) We are enjoying skin to skin today and I'm just absolutely smitten by this little guy."

jmn

Hyrum and the NICU: Day 5, September 15, 2014

"September 15- Day 5 update: some ups and some downs. Overall, he is still doing well. The big up is that he is off the cpap machine and just getting room air o2 through nasal cannula! He is doing so well that way! And also he is still very cute. :) that is also an up. He's been opening his eyes more for us when we are around and touching him. That is fun. Now for the downs- his bilirubin has gone back up, so it's back on the lights for him. We'll see where he's at in a few days. Also his platelets fell again and he is getting a transfusion today. Bleeding in the brain is a risk for preemies (this would be like an infant stroke) so they want to be really careful with that level. Makes me a little nervous. But the docs seem to be pretty calm about it- vigilant, but not freaking out. We'll check his platelets in another couple of days. So, once again, we are SO grateful for blood donors! If you are wanting to do something to be involved or help, go donate blood/platelets! Tomorrow they will try increasing his feeds slightly and weaning humidity. As of last night, his weight was up to 2lbs, 2oz. ....woosh, just had a scary dip of his heart rate. It took a nose dive out Of nowhere and the alarms were going crazy. First time it's done that tht we know of. But it self-corrected so they'll just note it and watch. Sure love this little guy. They just were fixing his air cannula and he was doing so well without anything that they decided to leave him totally off air support and see how he does! Looking good. Two interesting experiences today- power went out in the NICU for a sec. ! Talk about feeling vulnerable. I am grateful that hyrum is off all his breathing support for now because it wasn't much of a blip for him. And they didn't have any rh negative platelets to give him- we would have had to wait til tomorrow for those. Platelets you can give rh + to an rh- person and it's ok, unlike red cells. But still it is sobering."

A regular newborn diaper vs. Hyrum's preemie diaper

Hyrum and the NICU: Day 4, September 14, 2014

"September 14- Update for today. Hyrum is hanging in there! Waiting to figure out platelet transfusion decision until tomorrow's labs. Can't take too many labs from such a little body. So we wait. Today hyrum is 30 weeks. His weight is up to 2 lbs, 1 oz. we got to the hospital and are still waiting to see him because he is getting a picc line placed today. This is to get him more nutrition and be able to handle more things- transfusions, etc. and will replace the line in his umbilical cord. I think we're waiting on X-rays to finish now. Then hoping to do skin to skin after that. They are watching to see if he can tolerate the picc line and the increased feeds well. His bilirubin levels are holding steady. I think they are thinking one more day under the lights. He has tolerated his oxygen weaning well and we're still going there. Thanks for all the prayers. He is fighting hard! I was discharged from the hospital yesterday. Last night was very rough. Trying to figure out how to make it all work. Picc line placement went well! Didn't digest his last feed, so they're holding te next one. Also he is on to cpap machine now! That is a good improvement. And here's a picture and check out that sweet hair. :)"

Poor little hand...

Hyrum and the NICU: holding Hyrum for the first time

The day after Hyrum was born, Eric's sister, Jen, and her husband, Eric B., came up from Tucson to visit us. Eric B. and Eric gave Hyrum a priesthood blessing. The Spirit was strong and Hyrum was blessed to heal and grow well, among other things. It was a sacred experience and I know that Hyrum's miraculous progress was a direct result of that blessing and our faith. I know God's power, the power of the Priesthood, is real. I am so grateful to have it to bless my life. 

Much to the amazement of his doctor's and nurses and all of us, Hyrum - who had been so hypoxic and his blood so full of acid that the perinatologist did not expect him to be born alive- had a LIGHTENING course getting off of oxygen assistance. First the venitlator, then down to the CPAP machine, then down to oxygen through a nasal cannula, then an oxygen mask off to the side of his head to increase the concentration of pure oxygen available for him to breathe in, and finally to breathing room oxygen with no assistance whatsoever. All in a matter of days. It was truly a miracle.

Because of his fast progress, I was able to hold Hyrum for the first time just a few days after he was born - something I hadn't thought would be possible so soon. It was a boon to my tired spirit. The NICU doctors were very big proponents of skin to skin or "kangaroo care" for premature babies, as a means of accelerating their healing, development, and growth, promoting bonding between parents and child, and overall protection and well being of the preemie. Skin to skin is absolutely incredible. The Lord has created AMAZING bodies for us, I tell you what. There is a huge list of benefits of skin to skin - too many things to list here- but skin to skin care:

 -helps regulate baby's heartbeat and breathing as they lay on their parent's chest and listen to their heartbeat and feel their breathing rhythms (important because the centers of the brain that regulate heartrate and breathing are immature and don't always function properly in preemies)

-helps regulate baby's body temperature. Total geek out moment: studies have shown that when a preemie lays on it's mother's chest, the mother's temperature in her chest area will go up or down depending on the baby's need (up if baby is cold, down if baby is too warm) until just the right temperature is reached. So amazing!!! (Important again because preemies have problems regulating their body temperature and can use up a lot of precious energy that is needed for growth trying to stay warm.)

-promote bonding between parent and baby

-results in increased weight gain

-promotes deeper sleep and quiet alert states (important for conserving that energy and helping baby GROW!)

-promotes breastfeeding and can result in increased breastfeeding

and so on! It is so cool and incredible! I felt so empowered and proud of my body and totally in awe of the perfect, beautiful synergy the Lord has created between the bodies of baby and parents. To our NICU doctors great credit, they urged us to do as much skin to skin time as possible each day with Hyrum. It became a vital part of his healing. And it became a calming, intimate part of each day for us.  I knew I was doing the best thing possible for Hyrum, the alarms went off less, my blood pressure surely dropped, and I fell deeply in love with my sweet little son. It was amazing to learn the ins and outs of his breathing and mannerisms, to feel him slip into deep, relaxed sleep, to see hints of tiny preemie smiles of contentment that would only show during skin to skin, and eventually to watch in wonder as he started rooting around to breastfeed totally unbidden. 

I feel so blessed to have had that time to devote to Hyrum in the NICU. I have no doubt that it helped him progress so quickly. It was an exhausting round bouncing between pumping every three hours, talking with doctors and nurses, cleaning pumping and feeding equipment, doing skin to skin sessions, helping with Hyrum's cares every three hours (working with the nurse to change, feed, and weigh Hyrum, take vitals, etc.), sneaking in a quick shower or a bite to eat (couldn't eat in the NICU because of NICU policy), and so on. But it was worth every sacrifice.

Holding Hyrum for the first time - one of the best feelings in the world!

Hyrum and the NICU: Day 2, September 12, 2014

"Sep 12- Here's our little man today. Still doing well on room air settings. They are trying a little wean today to see if they can get his settings down more. Still under lights for jaundice. Some encouraging lab numbers this morning. Tried his first feed with a few cc's of my milk through his NG tube. Will see how he tolerates it. He's a fighter! And i think he is stinking cute!! 

What does room air settings mean? Are they forcing room air into the cannula? Yes. He is currently getting 15 psi pressure when he is breathing in. They started the cannula at 24 psi so they have backed off considerably."

 Under the phototherapy lights for jaundice

The sweet, silly little "sunglasses" he wore during phototherapy

The many machines and cords and fluids that helped keep Hyrum alive for the first little while

Hyrum and the NICU: Day 1, September 11, 2014

"Little update this morning: He is doing well this morning, as of early this morning when we were with him. It is an uphill battle, but his labs showed lots of tiny improvements in the right direction. Ph is slightly higher, oxygen needs were only at 24, blood pressure was up In a bit better range. He is looking jaundiced so they will probably be putting him under the lights soon. We were able to touch him and I think he is just the sweetest and a total cutie. :) I also started pumping and have been getting some colostrum! Exciting! The NICU doc is super enthusiastic about breast feeding and how hyrum needs my milk for the best chance of survival. I am so pleased about that."