Thursday, July 22, 2010

Zoey's NICU Stay PART 2

On December 10, feedings were resumed for Zoey. She started out at 5cc which is equivalent to 1 teaspoon every 3 hours! (She was still getting the IV nutrition as well). We had to slowly work our way up to 56cc's of milk. This same day, an echocardiogram was done. This was done because the doctors had thought that they had heard a heart murmur. The findings were normal, noting turbulent flow into the left branch pulmonary artery consistent with physiologic murmur. Her mean blood pressures ranged 43-64 mm Hg in the week before she got to go home. So, in other words, she had a normal murmur that lots of preemie babies have that can correct itself.

During this time, one of our favorite night time nurses noticed a small lesion on Zoey's right posterior scalp. She noted this and a dermatologist came by the view it. He said that it looked traumatic in nature and recommended just observation. This seemed to maybe have happened from trauma such as maybe hitting her head on the isolette or during birth. (Likely the first choice.) We later finished up the observation with our peditrician Dr. Akasanya.

A few days after resuming her feedings, Zoey was moved out of the big NICU room and into a private NICU room in the area called "Dragon Fly Cove." Zoey was in room number 1 (obviously because she is #1 ; ) She got to sleep in a big girl crib (you know a hospital version of what she has at home and never sleeps in haha). It was really nice because instead of making a hundred trips to the pumping room and washing my pump parts at a common use NICU sink, I could pump and washing my pump parts in her room. I also had a recliner with a tray and there was an extra chair as well for mom or Michael or Dad. There were nights that we left that room at 2 am, just as we did with the big NICU area. It was also nice to be able to bond with my baby and be all alone instead of around all these people. Though, we really missed our NICU night nurses badly!

During her stay in the big girl room, Zoey was visited by various therapists. This is done routinely with all NICU babies at UT. The Physical Therapist that visited worked with Zoey's feet and placed her in little baby splints which were absolutely adorable. Nurse Crystal called them her "Walking Boots" when she came to visit Zoey. They taught us how to do exercises with her feet and how to put the splints on. (We have since had all sorts of trouble with splints since she has gotten bigger and is able to kick them off.) They also put her hands in bilateral hand splints because they said she was holding her thumb inside of her hand too much. Am I crazy or do all babies do this? She wore them for awhile but not for long after we came home. She hated them and I couldn't see the point.

(Notice the Hand Splints)

Throughout our NICU stay, a dear student of mine was battling cancer. I had gotten tons of emails and phone calls to check on us and had found out that she was at Children's Hospital right down from the RMH we were staying at. I decided I wanted to go see her. We enjoyed it so! I took a picture of Zoey that the nurses had made for me and gave it to Sara. She loved it. She seemed to remember me and it was great to see her and her sweet momma. We enjoyed our fellowship together and it was nice to see folks from home. After alot of ups and downs, Sara is now cancer-free and home. Praise God!

December 16 or 17, Zoey was observed by a Speech Therapist. Crazy, huh? We thought so, too. Apparently, they observe babies in order to watch how they take their bottle. Somehow that relates back to the whole speech thing. It was something new to me because I would have never made that connection. The young girl who did the observation made quite a few comments that Zoey wasn't taking her bottle the way she should. She explained about the suck, breathe, and swallow technique that Zoey would have been developing in the womb at that time. I had read about it before Zoey was ever born. Apparently, she thought that Zoey was not taking enough sucks before taking a breath.

Now let me add...I was extremely nice to everyone who was kind enough to help my daughter at the NICU, however, I got highly upset with this particular therapist. I was already very nervous when feeding Zoey because she would get strangled on her milk a least 3-4 times at every feeding and when she did the monitors would go wild because her heart rate would drop and all. The nurses would come check and say it was fine. However, I hated it. I was so scared that she would get strangled and I wouldn't be able to help her. So... if she needed a breath between sucks, I let her have it. I didn't count the sucks between each breath... my concern was making sure that she didn't get choked. The rule of thumb is that if it takes more than 30 minutes to feed the baby a bottle, they are burning more energy drinking it than they are getting from it. The therapist said that the short number of sucks between each breath meant that she wasn't close to term with that aspect yet and this we knew. She was 6 weeks and 1 day early!

She also made various comments about how Zoey was sticking her tongue out to say she didn't want it and making faces and moving her hands to tell us she was finished. And then, she proceeded to toss almost a full bottle of my breast milk away because she said Zoey was finished. She finished by saying that maybe Zoey needed another feeding tube to just help encourage her along with her feedings.

This was the silliest thing I had ever heard. I could feel my face heating up and I knew my mom was upset as well. I finally spoke up and said, "So I guess that means that we'll be staying even longer!" They could tell in my voice that I was NOT happy. She said that it would probably help us to go home sooner (No way that was true because then after a few days of the feeding tube, I'm sure we would have had to have a few days to get back to regular feedings and it would have probably delayed us at least a week!) She then left with one of the other NICU nurses and they discussed her findings outside Zoey's room with another lady. They kept glancing back into the room and I'm sure they could tell that we were staring a hole through them.

My mom and I had planned to have lunch and go back to the RMH (I'll discuss later) to rest a bit because we were sooo worn out (and we had CPR training that night during our usual rest break) and after this whole drama scene... we only ended up eating downstairs in the cafe and trying to nap in the car. We wanted to be back up there for Zoey's next bottle to prove the point that she could drink her bottle ok (and she did!) I called my hubby and mom had called my dad while we were waiting. My husband was furious and said he wanted absolutely no more tubes put in Zoey unless they were absolutely necessary. I totally agreed!

Now to all you speech therapists out there, I am not dismissing the connections with a baby's eating habit and later speech development. That's fine. But this particular therapist was completely off with her comments. How do I know? Because she observed 1 feeding and made suggestions based on that 1 feeding. Also, she made all these comments about Zoey going back on a feeding tube and how that would help not hinder. Well... Zoey did just fine NOT going on that feeding tube again and got to come home just a few days later.

Also on December 16, Zoey was given the ALGO hearing screen. Both ears passed and it was recommended that we have follow-up audiologic testing in 6- 9 months due to risk factors posed from being a preemie and from the various antibiotics given to Zoey to treat her NEC that could cause hearing problems.

Also on this day, Ms. Crystal (our night nurse from the big NICU room) came to visit.  She called Zoey's splints her "walking boots." 

As Christmas neared, mom and I were antsy to get home. We were tired... no more like exhausted. It is so difficult to live out of suitcases, be away from your family (especially near Christmas), brave the bitter cold to come and go from here to there, eat fast food 24/7, live in the NICU for hours upon hours, plus have a brand new baby, be weak from having her and not be home to enjoy her. That was hard! But it was all so worth it. I will never forget the frigid temperatures at 2am when we were walking from the NICU to the car to go back to the Ronald McDonald house to stay. I will never forget how emotional I was. I would cry when my mom would go home on a Sunday, all the while knowing she'd be back on Monday morning. I'd then cry when my husband would leave to go home (his boss was great to let him come on Saturday night and stay until Tuesday night). I'd cry when my dad would leave from a visit. I cried because I missed my lil brother. I'd get weepy when my in-laws left. I just wanted all those that I loved in one place like it was at home. I was never left totally alone and I praise God for my wonderful family who made sure of that.

On December 18, mom just out right asked Dr. Wright if we could go ahead and room in with Zoey. She had met all the guidelines for going home and rooming in with her parent was the next and final step. I was shocked when he said he thought that would be a good idea. Off we went, rushing around at Wal-Mart (in the cold rain) to get a cooler to transport my breast milk home in.  Then we were gone to the RMH to clean up our room. I loaded the car (in the rain!) and we got to work. We had to clean our room and do all of our laundry for the next family that would be staying in room 13. As we washed the sheets, we watched Days of Our Lives in the family room downstairs. We couldn't stay in our room because they were putting new windows in. Back home, chaos was erupting as it poured the snow. I was told that the flakes were the biggest that my dad and brother had ever seen. We began to wonder if we would even be able to get home the next day.

When we finished, I went to give our key back and was told to keep it until we left just in case we were to have to end up staying in Knoxville longer. So I took it with me to the hospital and we took our things up to Zoey's room.

Not too much later, we were moved to a small, private hospital room. It was just us and Zoey. It was my first night taking care of her. No nurses would be in unless I called for them or unless it was during her feedings to bring me her breast milk. This was a difficult night because I was so worn out and it was so hard to get up every 3 hours with her. It wasn't like being at home and waiting for your baby to cry. You had to get up on schedule to feed and do all the monitoring of them including taking her temperature, taking splints off or putting them on (hands and feet), changing a diaper, feeding, burping, etc. I was exhausted already and that made this even more difficult.

We awoke the next day feeling relieved that we had made it through the night without major problems. We were just Praying that her weight was still ok so that we could go home. She had to be gaining weight. It went well and she was going to be released. Now in the meantime we were keeping track of the bad weather that had hit back home. Even though it was calling for it in Knoxville, it didn't hit. All we had was a little rain. I called my husband and told him that it would be awhile before we left the hospital because they said that it usually took awhile. A few minutes later, the nurse came in and told us that it wouldn't be as long because they had started the paperwork ahead of time. I called my husband back and told him that we would be leaving shortly and I decided to bring Zoey home myself so that we wouldn't have to sit and wait for him to get there. He had had to work in the days before and wasn't already there with us.

The task of me getting my daughter ready for her hospital pictures began. I washed her off and washed her hair with a cloth (we could only do so much because she was still attached to wires). I put on a yellow sleeper with tiny pink polka dots and a big, pink, satin bow. The nurses wouldn't allow us to take off the wires (which was strange because she came in right after the pictures and took them off) so we just left them on. The photographer did a great job with the pictures and hiding the wires. You couldn't even see them. Here are the pictures:

After Zoey's pictures, we began to get Zoey's things gathered to go home. I decided to start loading the car. Wow! What a job! I didn't think it was going to all fit in my midsized sedan. You have to remember that we had 3 weeks worth of luggage as well... plus all of Zoey's things and things we had acquired (gifts, hospital stuff, etc.) I finally stuffed the trunk and got the cooler of breast milk (yea a whole cooler full!) in the front passenger floorboard. The car was stuffed to the gills and there was no spot left unfilled. Next came the task of putting the car seat base in. I know you are going to think I'm an idiot but I couldn't figure it out for the life of me. I was making it way too hard. I called my friend Deanna's sister, then my friend Kim, then Deanna's sister called me back. All the while, I was trying to force the thing in backward. I know people thought I was insane but I was so mentally exhausted that it seemed like I couldn't wrap my brain around something even that simple. I was freezing in the cold and crying. Once I actually turned it around, it fit perfect. I hooked the two straps to the hooks and then I even put the seat belt through to make it extra safe. Finally we were ready!

I went back upstairs and was able to carry my baby out in her car seat. My mom drove the car around to pick us up and we were finally headed home with my new, baby girl.

Mom and I switched out and I drove the entire way home. The interstate was ok until I hit Jellico mountain which looked like a winter wonderland. I just took my time and went slow. Zoey slept the entire way! She was a good traveling partner even then! Finally we were in Corbin. We drove by and picked up some pizza's for everyone and headed to my house where my hubby, brother, and daddy were waiting to unload the car and help us get in. My brother took Zoey immediately because he had never seen her before (only grandparents and parents were allowed back during this horrible flu season). My dad and hubby gathered all the stuff to bring in. We sat around and relaxed. I was exhausted, as was my mother. Zoey slept through most all of it.

After everyone left, I leaned back on the couch with the recliner part out and held my baby girl on my chest. It was so perfect. I was so tired. I was so scared to fall asleep like that because I was afraid I would drop her or something as I slept. She was so tiny. So I put her in her bassinet and my hubby and I fell asleep beside her in our bed. That first night was a blur. I was so tired from the 3 weeks at the NICU that I was almost too tired to get up and down with her. It's hard enough as a new mom but after that experience and the exhaustion that comes with it, it was killer. I woke up the next morning with a killer headache. My mom and brother came over and mom and I went to work on her room. I had never gotten to finish it because I had went into labor at 32 weeks. The furniture was all ready because my hubby had taken care of that. The walls were painted and the border was up. The new flooring was finished but nothing was out. So we spent hours putting clothes in the drawers and closet (adding to those that was already there.... I had gifts of clothes and a whole garbage bag full of my nieces' clothes for Zoey. Thanks to my sis-in-law, they were washed and ready). We finished and I was worn out.

Here are pictures of Zoey's room:

I spent the remainder of my maternity leave with Zoey every minute of the day with the exception of a few hours here or there. We stayed indoors at home or indoors at mamaw's house and that was it. Zoey went nowhere else except to the doctor's office. (Her first appointment was the Wed. after she was released from the hospital, December 23.)

There is one thing that I have left out (I'm sure there are more but this is a big one). We spent our 3 week stay at the Ronald McDonald House in Knoxville, Tn. I had never visited a RMH before and I was pleasantly surprised. Our room was beautiful, our bathrooms were beautiful, the entire house and grounds were beautiful. Everything was so well maintained and was so home like. The staff was so friendly and helpful. There was dinner cooked and delivered by various volunteers daily (even though we were rarely there on time for dinner because we stayed with Zoey so much) and they had anything you could need including batteries, shampoo, soap, toothbrushes, toothpaste, razors, detergent, baby detergent, dish washer, a kitchen to cook in, etc. You could just go get whatever you wanted from the pantry or the fridge at anytime. It was amazing! I could never thank the folks at RMH enough for their kindness and generosity. If any of you need a charity to support, this is definitely one to consider! I plan to do so myself.

Extra info:  Zoey's birth weight was 2490g and her length was 45.5cm. Her birth OFC was 30.5cm. Her discharge weight was 2869g and her length was 46cm. Her discharge OFC was 32.5 cm.

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