Justin Update

Justin's doing pretty well and came off of the ventilator yesterday. Mom and I got a nice surprise this morning when we arrived at the hospital and found out he was back on nasal cannula. It's a huge relief to see him so alert and back to his old self. And since he's back on cannula I got to feed him at 11 and he did really well. Unfortunately his 2 o'clock feeding didn't go as well. He's still pretty tired so he only took half of his feeding from the bottle and the nurse had to give the rest through his feeding tube. But I'm fine with that, I want him to get his rest so he can get nice and strong for when he comes home. They haven't said when he'll be discharged but he'll be there for at least 4 more days until he finishes his antibiotics which are administered via IV.

Looks Like Pneumonia

We asked how he could've gotten it and were told that it's a result of the staph infection he already had. The easiest way to explain it is that the stress of him coming home and being in a new environment weakened his immune system and made it easier for the staph infection to grow and migrate into his lungs. It also didn't hurt that he was on oxygen and the nasal cannula was a breeding ground for bacteria. Unfortunately we weren't told this when he was discharged or that his cannula should be changed twice a week.

Justin was started on a 10 day dose of broad body antibiotics when he was admitted on Wednesday. Now that they know what type of infection he has they've tailored the medication but they're still waiting to find out what strain of staph he has. But his blood gases have been good so they've been able to wean the settings on the ventilator. He'll have an x-ray Monday morning and if his lungs have improved they'll take him off the ventilator and put him on c-pap or nasal cannula.

He's still a little out of it because of the medication but he was much more alert today than in previous days. It was nice to see him acting more like himself and looking around. I can't wait to get him home but I'm not pushing it. He needs to get nice and strong so that this is hopefully the last stay in the NICU.

My Two Favorite Men

Back in Hospital, Again

So our little guy just can't seem to catch a break and is back in the hospital. It started early this morning with him not finishing all of his bottles. Then I started noticing his breathing was a little different, not particularly faster than usual but it sounded funny. I mentioned these things to his home care nurse during today's visit and she was concerned but didn't think that these things within themselves were too concerning. And since Justin had a doctor's appointment tomorrow she told me to monitor him and if things got worse to call his pediatrician. I was running errands so I wasn't home for his noon feeding but my mom said he didn't finish that bottle either. And then she mentioned that he wasn't fussy or been crying much so I thought that was a little strange. And when I changed his diaper he just layed there and didn't make a fuss which is not him at all. I tried feeding him at 3 and he was really disinterested. So I called the pediatrician's office but was told that his doctor was done for the day and to go to the after hours clinic which started taking walk ins at 5. Not thinking that there was anything major going on my mom and I waited and took him there, only to be told that they weren't touching him because we really needed to go to the ER because they felt it was more serious.

Fortunately we were seen immediately but nothing prepared me for the whirlwind to come. Justin was rushed back to a trauma room and by the time I got in there they had cut off his clothes and were attempting to put in an IV. Then I hear them say that they're going to intubate him and I loose it because that means he's going back on a ventilator and would obviously be re-admitted. I was so relieved when the ER doctors called the NICU and they came down to assist. The NICU nurse practitioner's were asking me what happened but I don't really know and all I could say was he just wasn't taking his bottles and he was lethargic. But in the back of my mind I'm doubting my motherly instinct and getting mad at myself because I should have called sooner. They kept telling me that there's nothing different I could have done and that unfortunately this is something that's going to happen because of his prematurity. But somehow that doesn't make me feel any better.

We're still not really sure what's going on. When they got him hooked up to the oxygen saturation machine in the ER he was satting at 60 which is really low (a good range is 85-92). And when they got his clothes off they noticed that his chest was significantly retracted which indicates distressed breathing. The x-ray shows that his heart looks a little large which could indicate excess fluid and also that he's working really hard to breathe. He was readmitted to the NICU and they're running a series of blood and urine cultures and takings tons of x-rays to see what's going on.

What a Week

On Monday Justin had his first appointment with the pediatrician. On Tuesday morning he had an appointment with the eye doctor. His right eye is finally showing some improvement so I'm very hopeful that he won't need repeat surgery. He will be seen again on Friday to ensure that the disease continues to regress. That afternoon he had a visit from his home care nurse. She makes visits 2-3 times a week to check his weight and draw blood to check his electrolytes. The results are then discussed with the NICU doctors to see if any adjustments need to be made to his medications.

So the first few days home with Justin were actually good. Granted we didn't sleep through the night because we had to wake him up every 3 hours to eat, but we were getting at least a good 2 1/2 hours of solid sleep. I was even telling Carl Wednesday afternoon that Justin was a pretty good baby and wasn't crying much. But that night things took a turn for the worse. Justin was fussy all night and could not be soothed so we got NO sleep. The next day I realized that he hadn't had a poopy diaper and he had been having at least 6-8 the previous days. Thursday was no different, so first thing Friday morning I called the pediatrician and told them about his lack of poopy diapers and constant irritability. But of course Justin was the sweetest little boy the entire doctor's visit so they thought I was crazy. We were told to add Karo syrup to his formula to help relieve the constipation. Unfortunately he was still backed up so we got no sleep Friday night but he finally got some relief on Saturday.

Adjusted Age

Babies who are born prematurely often have two ages:

· Chronological age is the age of the baby from the day of birth—the number of days, weeks or years old the baby is.
· Adjusted age is the age of the baby based on his due date. Health care providers may use this age when they evaluate the baby's growth and development. So, if a baby is 6 months old, but was born two months early, his adjusted age is 4 months.

A premature baby who is 3-months-old is not developmentally the same as a full-term baby who is 3-months-old. Since Justin was born 16 weeks early his developmental expectations should be adjusted by 4 months.

Most premature babies “catch up” to their peers, developmentally, in two to three years. After that, any differences in size or development are most likely due to individual differences, rather than to premature birth. Some very small babies take longer to catch up.

Justin's Home - Take 2!

After 4 nights in the hospital Justin was discharged on his due date. Carl and I joked that he wanted to go back because he missed the nurses and his pod mates and also because he never had a chance to stay in the progressive care nursery (PCN). Normally babies are admitted to the intensive care nursery (Pods 4 & 5) and then transition to PCN to gain weight and learn how to nipple and are ultimately discharged from there. But Justin remained in the intensive care pod because of his staph infection. So now that he got to experience PCN there's no need to go back, lol.

Justin was discharged just in time to watch the Lions loose yet again. We didn't get a chance to put him in the Lions onesie since it hadn't been washed yet but he was still dressed appropriately for Sunday football.

Another Night Without Justin

So what I thought would be a short hospital visit has turned into a long 4 nights without Justin. And although I know the most important thing is that Justin is okay and he be monitored to ensure this doesn't happen again I miss my baby and want him back home. Carl was really hoping he was discharged today so that they could spend tomorrow on the couch watching football. Even though the Lions suck right about now Carl still bought Justin a Lions bib and bottle, and our really good friends bought Justin some Lions onesies.

Last night Justin was eating and pooping well but he was still experiencing some desats. Most were during feedings but he did have a couple at other times. So the plan is to increase the amount of rice cereal added to his feedings. The thinking is that the thicker his feedings the easier it is to stay down. They also started increasing his oxygen intake during feedings so hopefully these two things combined will help reduce the amount of desaturations.

Back to Hospital

So Justin gave us a huge scare yesterday. During his noon feeding he stopped sucking, which by itself isn't that unusual. He does that often during feeds so I just lightly rub his cheek to remind him that there's something there and to start sucking again. But he didn't respond and when I looked down at him he was blue. So I layed him on the bed and looked at his chest and noticed he wasn't breathing. Thank goodness Carl decided to take the week off after all so I told him to call 911 and I started CPR. After about 2 sets of 30 his color came back but he still seemed out of it. EMS arrived about 5 minutes later and when they checked his levels he was satting at 100% so that was good. But they took him to Sinai-Grace anyway just to be on the safe side.

We were told that more than likely he would be admitted for monitoring, either in their NICU or we would be sent to Children's. But Carl and I were pushing for them to send us back to Henry Ford since that's where we've been the past 3 1/2 months. No one in the ER seemed to know what to do with him and none of the nurses wanted to give him an IV so they sent us up to their NICU so one of the nurses could put in a line. Everyone was amazed at how small he was and stopped to take a look. Carl and I were obviously very protective and were very relieved when the nurses from Henry Ford arrived to pick Justin up and take him back "home".

Sadly he spent Wednesday night in Henry Ford's NICU. When we got to the hospital today they told us that he was having quite a few desaturations. They took an x-ray of his gastrointestinal tract to see if he has reflux and the results showed a small insignificant amount. But just to be on the safe side they're going to start adding rice cereal to his feedings to prevent him from aspirating in the future. They decided to keep him overnight again but I really hope he'll come home tomorrow, I miss my baby.

Justin is finally home!

After 102 days in the NICU we finally brought our baby home, weighing in at a whopping 4 lbs and 14 1/4 inches long. Carl and I arrived at the hospital at 10 this morning excited about taking Justin home. But his late morning eye appointment turned into a 2 p.m. eye exam so we waited to leave until after his 3 p.m. feeding so we wouldn't have to rush to get him home. We finally left the hospital at 4 p.m. I guess Justin was excited to come home too because he dropped a nice little (or maybe not so little, lol) package as soon as I took him out of his car seat. Aunty Carlene and Lalla are over so I'm going to try and take a nap while they watch him. I need to get all the sleep I can since Carl is going back to work tomorrow and I'll be all by myself.

Justin's Going to McDonalds on Monday!

That's what the NICU nurses say when a baby is DISCHARGED. Yep, you read it right, my baby is finally coming home. For some reason babies seem to take a few steps back when the term discharged is used so they started using McDonalds, lol. And it's funny because in passing one of the nurses said they heard Justin is going to McDonalds and the representative from the oxygen tank company heard her and said "McDonalds sounds good, what are you getting". I laughed and had to explain to him that it was code for him coming home.

This morning I looked at Justin and said to myself "you look bigger". It took me two minutes to realize that he looked bigger because he no longer had his feeding tube in so I could see more of his face. I was so excited because I wasn't expecting them to remove it. And even though I knew he would more than likely be discharged next week I was not expecting them to say that we could bring him home Monday. But yesterday he passed his car seat test with flying colors. This morning I was finally able to pick up his prescriptions so the nurse was able to go over the medications with Carl and I. And we met with a representative from the company supplying his oxygen tanks and received two tanks for home and two portable tanks.

And now that he's coming home he can finally start receiving breast milk. For now he'll be getting breast milk for 2 out of his 8 feeds but they'll need to be fortified with formula. But the plan is to gradually increase it as he continues to gain weight. So it looks like all my hard work as a milk cow is paying off. Now lets see if I can keep it up.

Week 14 Update - Thursday, September 4, 2008

Earlier in the week Justin's oxygen was reduced from 1/8th to 1/16th. The doctors tried weaning him further to 1/32nd but Justin wasn't having it and didn't like that change at all. So for now he remains on 1/16th liter and will be going home on oxygen.

Justin's eye exam 2 weeks post op showed that he still had Stage 3 of ROP but no longer had the plus disease so we'll wait and see what next weeks exam shows.

Justin's finally in a big boy crib. The decision was made to put him in a crib on Friday but they didn't have any cribs for him to move into. When I mentioned it to one of the NICU admins on Saturday she went and stole one from the post partum unit. I guess there's some perks from being there 3 1/2 months and having a child whose considered a "senior citizen" compared to the rest of the babies.

Justin now weighs 1727 grams (3 lbs 12 oz) and his feedings were increased to 36 ml. Justin is now on full bottle feeds and taking most, if not all of his feeding. But if he doesn't take his entire bottle during one feeding they'll add the remaining on to his next feeding, and that seems to be working pretty well.

Discharge Planning

So it looks like it's finally here. They haven't given us an exact date because of course it's all up to Mr. Justin but they're thinking sometime next week. The at home oxygen tank has been ordered and the medications have been sent down to the pharmacy so I can pick up tomorrow and they can teach me how to draw up his meds. Tomorrow I plan on taking in his carrier so they can do his car seat test. In order for him to be discharged he needs to be able to sit in his car seat for an hour without any apneas, bradycardias or desaturations. So it looks like Carl and I need to live up our last weekend alone and childless. And even though I'm scared out of my mind I can't wait to bring Justin home. Everyone keep their fingers crossed for us!

Justin's Bath #2

Well, two weeks ago it was my turn to give Justin a bath. I had his soap, cleaning cloth, diaper and clean clothes, now we're ready. Once the nurse filled up his tub, we were ready to put him in! He did pretty good, didn't cry too much or put up a fight. He was pretty quiet......... I wonder why? We find out later that Justin likes to leave us gifts in his bath water, the kind that float! Well, the time came to take him out, and dry him off. I think he thought he was at the Baby Spa, because he had dad, mom, and nurse putting moisturizer on his arms, legs, head and chest and he was just taking it all in!!