I am trying to write as much as I can about what is happening daily with the babies before I forget! So it may not be the most interesting read, but I know I’ll want to remember it later.
Birth Day – Level III NICU Nursery at Summerlin – Mommy went to the nursery after getting up and around. Ben and Ryan were being taken care of by one nurse and Gary was being cared for by another. It was strange, but it was explained that if all 3 babies are together, it could be too much for one nurse, especially if they were very sick babies. Our babies were doing great. Right away on room air, no need for ventilators or oxygen which is very common with preemies. The babies were given IVs and started on TPN and Lipids to help them grow. Gary and Ryan were put in isolettes, but little Ben was in an open heated bed because Summerlin was so busy. They didn’t have an isolette. Dr. Litner was in the NICU with them all the first day.
1 Day Old – We visited the babies early in the day and then I went back to my room. The NICU let us know that Pic lines were going to be put in the babies. For them it’s very good, because it’s one access point rather than sticking them multiple times for blood and IVs in babies don’t last very long. This was difficult for me because we, with Grandma and Grandpa wanted to go to the NICU and see the boys, but they told us repeatedly to call later, come later, they were working on getting them in. I could just envision them screaming in pain while the doctors are trying to work. My Mom and Dad came to the hospital too and we all waited together. Emotions had set in already for me and I was tired from the surgery, but so wanted to see our boys. I wept for no particular reason, just had to let it out. All the babes lost weight from birth, anywhere from a 4 to 8 ounce range. Finally mom and dad left to go back to our house and I tried to manage with the pain and emotion until late in the night. Finally at almost 9 p.m. we went back to the NICU and the babies were exhausted! It made me cry to see them look so limp. They were so tired and had been over stimulated. The babies were being given 2 cc of 20 calorie preemie formula through their feeding tubes every 3 hours.
2 Days Old – Babies were moved to the level II NICU because they are continuing to do great! We had a great nurse, Lisa, in the NICU. She put tie dyed onesies on the babies that she had made. All three babies were in a space all together, which was really nice too. The formula went up to 5 ccs per feeding and we also got to try bottle feeding for the first time. Daddy Chip got a lesson on how to change diapers and he did great!
3 Days Old – Nurse Maria in the day, Albina at night. We also saw Mary Beth, an occupational therapist who talked to us about feeding and how preemies can or cannot eat. We learned that to burp our little guys we rub their back or head, not pat them. 10 cc per feeding. Ben and Ryan spent a day and night each under the photo lights for slight jaundice (9 on the scale of measure, but 20 to 30 is the risky measure). Met nurse practitioner Dana who is caring for them. This day was the most emotional for me. Very emotional, but it’s all for good reasons. I just found myself weeping off and on all day.
4 Days Old – Z’ Marsha was the day nurse at Summerlin The babies Left Summerlin, and went to Spring Valley via ambulance with 3 nurses. Daddy went to Spring Valley at 8 p.m. to see where babies were and how we needed to visit and meet the staff. Daddy was unhappy with nurse Sina, but took charge and made the situation as good as could be. Levels were still low for Gary, so he did not yet need the lights.
5 Days Old – Nurse Rachelle, I left Summerlin and went home to sleep. Went to Spring Valley to visit and met Dr. Cruz. All 3 babies are together in a private room. The NICU at Spring Valley was much quieter than Summerlin. I wasn’t sure we made the right decision, but would give it a chance. It was supposed to be run just like Summerlin. I needed more sleep and went home to mull over whether the boys were in good hands.
6 Days Old – Nurse Deb, mom and dad came to feed/hold with us. Feedings moved up to 20 cc each, 20 cal formula. We just held our babies and enjoyed the quiet. Grandma and Grandpa came to the NICU as well.
7 Days Old – Nurse Rachelle for the day, Barb at night, Ben’s pic line removed. All babies almost back at birth weight. Gary is moved from the isolette into an open crib! Continued progress is amazing! We are so pleased. We went to the hospital twice for bottle feedings at 11 a.m. and 8 p.m. There was a lot of spit up. I didn’t like the faster flow nipples at all. Gary spit up all over himself. Mommy was impatient with staff and how they handled things. Daddy Chip was also frustrated about all the directions he was getting. It was a hard day. We are learning that we need to use our voice to express our issues or things will not change. It’s a fine line when the people are taking care of our babies.
8 Days Old – Nurse Grace in the day, Barb at night, Ryan’s pic line was removed. 33 cc per feed for Ryan on , 30 cc feed for Ben but 22 cal formula, and 30 cc for Gary but staying on 20 cal formula. Gary also needed to get a slow tube feeding to determine whether or not he has reflux or is not ready for more formula. I also asked today that the nurses use only the low flow preemie nipple. They were using another that I feel is the reason they had some heavy spit up going on. Me and daddy went to the hospital for 11 a.m. and 8 a.m. bottle feeds.
9 Days Old – Boys are doing good. Ben and Ryan are both at 33 ccs. They are nippling very well and the preemie nipples are working well too. Gary is back in an isolette because he lost 1.5 ounces in the open air and all the babies need to continue to gain weight and not expend too much energy keeping warm.
10 Days Old – Blood found in Gary’s stool at night and was sent to the lab for a culture. He seemed like his normal self, and he finally drank a bottle almost all the way like his brothers. Ben and Ryan are clipping along. All babies are still on room air, and are doing fine in the Isolettes. All weights continue to go up.
11 Days Old – Dr. Aputia called and indicated that our little Gary has an infection and is sick with something they aren’t sure of and has been taken off of all formula. We also had to wear a protective gown and gloves to touch him. I was having an emotional day and didn’t like that I couldn’t touch our son except with gloves. I decided that I would not touch the other 2 boys, but just give little Gary hugs and love. He seemed more pale than normal and lethargic, but not super sick. Antibiotics are being given via IV and the PICC line Many tests are being done. Ryan was given a bottle feed every other feed rather just twice a day. They are up to 35 cc’s of formula per feeding. Ben has been doing as well as Ryan and we hope it will continue.
12 Days Old – Gary is sick and has been treated with antibiotics. Both Chip and I are forced to wear protective gowns and gloves to handle Gary. It’s too much for me to take. I hate it. It has been a tough 24 hours. He looked so limp, but still fighting. He is a trooper and has been taken off of all feedings and seems to be content without them. Ben and Ryan continue to do well. We keep our fingers crossed each day for more positive things for Gary, as well as Ben and Ryan’s continued success.
13 Days Old – Gary is still sick and has been transferred back to Summerlin hospital where they were born. It has been a really long day of lots of information related to Gary an his blood infection. We also learned today that test results from 2 days ago were not flagged for review and weren’t seen by the doctor as high priority. Not the fault of the doctor, but of the lab. Dr. Aputia was not happy and may be suspended on our behalf for freaking out on the lab. Gary has a “gram negative” bacterial infection. Both of us are very fearful of what the bacteria could do and want to wipe it out as soon as possible. Antibiotics are treating the bacteria, whatever it is. Belinda is the transport nurse who is also taking care of him. We go visit after the transport. The NICU is crowded with sick and premature babies. I worry that he may catch something else being there. The theory is that bacteria somehow got in the PICC line, but no one is sure.
14 Days Old – Ben and Ryan are still at Spring Valley but are co-bedding in the same crib! All feedings are on bottle feeds. The best part of today was that Ben and Ryan got to meet their sisters! Kaitlyn and Gillian were allowed in the NICU for an hour. Both girls held the babies and we took pictures and video. Gary is at Summerlin in the level III NICU. Lisa, our favorite nurse is his nurse. He needs a 3rd platelet transfusion to fight the bacteria. The atmosphere at Summerlin is colder than we remember and we wonder if we’ve made the right decision. Nicole is the night nurse and does not treat Gary the way we’d like. I have a very hard time with her gruff ways and get emotional. She shoves a pacifier in his mouth. I ask about test results and Nicole brings the charge nurse to tell us that she has no results in the computer. We still anxiously await the lab results of what the bacteria is. Gary is more feisty now and cries more.
15 Days Old – Gary is still in Level III NICU at Summerlin. Lisa is his nurse again. I am still disturbed at the prior night staff and talk to Lisa about it. She says she’ll talk to to the charge nurse. Lisa says that Nicole indicated that Gary “cries all the time” and thank goodness Lisa had taken care of him before and knew he wasn’t like that. This further stirred my anger/resentment because anyone who was fighting infection and being poked and prodded would not be happy. I was encouraged by his increased crying that he was getting better. When we went to see Gary, he had several wires unhooked and only had 1 IV remaining. It was a wonderful surprise that he would be moved to the level II NICU! We learn that the bacteria in his blood is Klebsiella and is 2nd in being dangerous only to E. Coli, which had been the theory of what he was trying to fight prior to really finding out what the bacteria was. Gary is improving with his color and doing better. Lisa told us he would have a lumbar puncture to find out if the bacteria had traveled to the brain. I was hoping this was not another invasive procedure, but it needed to be confirmed. Gary did well, according to the night nurse. I was so relieved.
16 Days Old – We found out that Ben and Ryan will come home tomorrow when we go for the morning feeding at Spring Valley, and before we go to Summerlin to see Gary. We are so excited, but sure wish Gary could come home with his brothers. Both Chip and I really looking forward to our boys coming home, but miss Gary too. It is a relief that will not have to go between 2 hospitals.
17 Days Old – We see Gary first at Summerlin today. He continues to get better. We are happy with the treatment of antibiotics, but are sad he has so many IV sticks. Ben and Ryan get to come home! Ben weighs 4 lbs., 2 oz., and Ryan weighs in at 4lbs., 7 oz. It takes awhile to check out of Spring Valley, but we finally get the boys packed up in the minivan and head home. It is bittersweet without Gary. Chip will go see Gary in the evening so I can be home with the other boys. Kari and my mom and dad are here to help and we work quickly to get things in order. We have a lot of stuff, but none of it is organized. I’m sure it will be interesting the first few days to iron out the kinks and get a routine down.
18 Days Old – My mom and dad leave today since my dad has some appointments in Reno. It is hard to see them leave, but they will be back soon. The weekend of October 26 for sure. Kari is here to help and it’s good to know we have an extra set of hands. I’m so happy the boys were home for a day before they left. The first night was tiring, but we are keeping the 3 hour schedule for feeds. Ryan doesn’t like the Avent nipples. I worry he’ll lose weight. Ben, our littlest guy is so adaptable and took right to the other nipples. He takes to the new bottles no problem. I go up to Summerlin to see Gary in the morning with Kari and he’s doing well, but I am stunned to see an IV in his head. I learn later that his little veins are being taxed by the IVs that need to be replaced every couple of days. I worry about what part of his little body will be poked next. I am very emotional about him being in the NICU. Dr. Cruz wants to transport Gary back to Spring Valley because he seems to be doing very well as far as the bacterial infection in his blood. There are so many babies at Summerlin that I’m happy to get Gary over to Spring Valley where it’s not as busy and we know all the staff. Gary’s condition weighs heavy on my mind. I’m so grateful that we don’t have more complex problems, but will worry until he can come home. It’s so hard to leave him there.
19 Days Old – Today Dr. Cruz called to ask us to come to Summerlin as soon as we can to sign the release to move Gary back to Spring Valley. Somehow it doesn’t work out today due to lack of staff at Summerlin. There are babies everywhere over at Summerlin. Gary is having trouble with severe spitting up, which may be reflux. We aren’t sure yet. After each feeding, he projectiles some of his food. Sometimes it’s a lot of what he’s eaten. Doctors are watching him closely. The nurse today, Sybil about drove me nuts. Everything I did and every way I did it was wrong…I just smile and nod and know that our baby will be out of here soon….OMG! The nurses tend to be less compassionate than I would like, but I guess it must get that way when you do the same thing day in and day out. Ben and Ryan are doing great and had their first bath tonight! Daddy and Kari got it on video, but we didn’t take any still photos. We will next time. There are so small, wiggly and slippery, I was hoping we could get through it without injuring anyone! Both boys enjoyed it and all was fine. We bathed them in the little tub they give you from the hospital. It was really fun!
20 Days Old – Gary went back to Spring Valley. I signed the papers and Summerlin Hospital apologized for not making it work yesterday. I followed them over and he seems quiet and content to be out of the noise of the busiest NICU in town. There are only 3 babies and Gary at Spring Valley! Very quiet. Gary is still having issues with the formula staying down, but it’s getting better when we take burp breaks more often. Ben and Ryan continue to do well at home. Chip and I are tired, we haven’t found our rhythm yet. Kari is awesome and doing whatever needs to be done, which is a huge help! The girls came home after spending the week with their dad. It is so cute! They hover over the boys and want to hold and feed them. I helped Kaitlyn feed Ben on the boppy pillow. The hardest part is balancing getting both girls involved and still communicate that the babies are small and that we have to be gentle and careful with them. So far though, the girls are doing great with it. Chip and I both told them that there will be plenty of feedings and diapers to change as the next few months come and go. I think maybe there is no concept of what is to come. Especially when all 3 boys are home.
21 Days Old – 3 weeks! These boys are 3 weeks old today! Gary is doing well, still working on the spitting up formula problems. Hopefully it will not last too long. The nurse mentioned it may be a side effect of the antibiotics or perhaps reflux, which I am learning is common with preemies. They took a belly X-Ray which turned out to be fine. I went to the hospital this morning to see Gary. He looks so good. His bright eyes are beginning to focus on faces and he seems to look at me with such intensity. He is such a sweetie…it is painful to leave. The bright side is that Daddy will be back to do a feeding at 8:30 p.m. Ben and Gary have enjoyed a whole day with their sisters. They have been fed and diapered by both big sisters. Kaitlyn and Gillian are both really enjoying being big sisters.