Back From New York

I'm back and my child is still alive. I knew Carl was more than capable of taking care of his son but I'll admit that I was concerned about his short temper and lack of patience with Justin. But I'm glad that I finally broke down and went. It was nice to visit with my aunt, uncle and cousin whom I haven't seen since my wedding 3 1/2 years ago. But the best part is that I feel this experience has made Carl a better father. Yes Carl helped out before but for the most part I was the one taking care of Justin. I just knew that after 1 day Carl would be calling me saying "come get your child" but that wasn't the case. We talked about 3 times a day but besides one call to ask where Justin's nasal cannulas were I didn't get any "how do I do this" calls". I am jealous because now Carl does this thing with Justin to get him to talk. He was trying to show me how this morning but Justin wouldn't talk to me. But as soon as Carl started doing it he was blabbering away. Oh well, I'm glad they had this quality time together.

Day 3 alone with Justin....

Sunday started terrible! I woke up around 4:30 am to the sound of howling winds and no sooner than I sat up.....the power went out. Being the Army guys that I am, I had my flashlights on standby, a mini mag lite put into candle mode kept the bedroom lit, and a LED flashlight for me to get around the house with. Justin started to wake up so I changed him and fed him and he went back to sleep for a short time. I stayed awake listening to the wind and trying to get Justin back to sleep. Around 6am he started fussing so I fed him a little bit and let him drift off again. Once daylight hit, I started to gather things for our trip to Eddies house later. No power means no heat so Justin and I needed a place to hang out for a while. I loaded up his swing, diaper bag and anything else I needed to take...by 11:30 we were ready to roll. Eddie had just as much fun playing with Justin as Justin had playing with Eddie. Although Justin ate pretty well, he was still fussy off and on, and never really slept of a long period of time. He did get to watch the Lions, play with his uncle and interrupt me from playing Grand Theft Auto!! We made it back home about 6 pm just in time for Justin to eat again, but after eating he was still fussy. I finally got him to chill and take a nap......that's why I'm able to use the computer now! Hopefully tomorrow will be like Day 1 & 2, we'll see! I've enjoyed the time with him as it has helped me learn patience and learn his signals.

Day 2 alone with Justin...

I didn't post yesterday because I feel asleep after putting Justin to bed. For the most part Saturday was a pretty smooth day, Justin ate well and was pretty laid back. Just like Friday, I gave him some time on his play mat and played with him from time to time. I gave him a bath Saturday night and a night cap of formula while listening to jazz in the nursery. Justin was ready for bed and ended up sleeping through the night!

Daddy Daycare

Well I finally put Justin to bed after a fussy 2hrs or so. I finally figured out that he was wet and hungry, and once he got what he needed, he went right to sleep. You may think that I am taking care of Justin for the day......wrong, it's just me and him till about Monday or Tuesday! Why you might ask, well because Georgina is out of town! Before you start asking why did she go out of town and leave Justin, let me add a few things. First off, my wife faithfully went to see Justin everyday while he was in the hospital for 6 months. Second, she has been home with him from Sep until just a few weeks ago when she went back to work! Not to mention the times I had to go out of town for work and she had Justin solo. During all the events that have taken place Georgy has been pretty much non stop.The other day she mentioned to a friend that she wasn't telling anybody she was going out of town because she didn't want people thinking bad of her for leaving Justin. She deserves a break and a good nights sleep, free from the baby's cries and the husbands snoring!! Not to worry, Justin is with his father...........the next best thing to mommy! As we put Day 1 in the history books, I must say it wasn't bad, for the most part Justin was a good boy! We'll try to keep it going for Saturday and hopefully all will be well. It is weird not having Georgy around, and I'm sure Justin notices and missed his mother, I can't blame him, I miss her too! But hey, this give me and Justin a chance to bond!

X-Mas Pixs

Justin says thanks...

to all his aunts and uncles for the cute clothes and toys. A special thanks to Grandpa J for the baby food maker and recipe/cook book. Now, I wonder why my parents didn't buy me anything, hmmm!

Playing with Gifts

Opening Gifts

Update on Eyes

Great news, only trace amounts of the disease can be seen in Justin's right eye and the disease is completely gone in his left. The core eye functions as far as his vision is concerned are "excellent" according to the doctor. At this point (12 weeks past his original due date) the chance of the disease getting worse and requiring additional surgery is highly unlikely so our next appointment isn't for another month. If there is additional improvement at that appointment our visits will be spaced out even more.

It's Cold Outside

My son is a time burgler!!

I gave him the benefit of the doubt for quite a while, every time me and Georgy sit down together to eat or something....Justin starts crying! For a while I thought it was just bad timing...that was until I caught him red handed trying to steal quality time from me and Georgy this weekend. It started with Friday night, while trying to have a movie date, he starts to fuss until Georgy picks him up! OK no big deal, we'll try again on Saturday......same results, arrrrgggh!! Maybe he realized that he wants to be an only child, because quality time is what got him here in the first place!!

Medical Update

So I'm really late in posting but here's an update from Justin's doctor's appointments last week:

Eyes - The doctor was very happy with the improvement in Justin's eyes. I don't know the exact details since Carl took Justin to this appointment and of course he doesn't ask all the questions I ask. We have another appointment on Friday which I'm taking him to so we'll see if the disease has totally regressed. I'm keeping my fingers crossed.

Ears - Justin passed his hearing test in both ears so he doesn't need to be seen again until his 1st b-day. Carl and I have been noticing that Justin is responding more to sound and is often startled, particularly by loud noises, so it's nice to have it confirmed that his hearing is just fine.

DAC (Developmental Assessment Clinic) - Justin's developmental progress will be followed by the Henry Ford NICU doctors until he turns 2. Since he wasn't quite 3 months adjusted at this appointment they weren't expecting him to do much. They looked at his head control which is pretty good. He's not turning his head yet but he's able to hold his head up on his own without support. They also looked at his ability to follow objects, which he didn't too well with. But I'm not too concerned because he does follow Carl and I at home and he loves following his mobile in his swing and bassinet. They gave us some suggestions and things to work on to help improve some of these early developmental skills.

Justin weighed 8 lbs 3 ozs last Thursday (12/4). Although he has been gaining weight it's been slow and he's only in the 3rd percentile for his weight, length and head circumference. Ideally they would like to see him gain between a 1/2 - 1 oz a day so they are increasing his caloric intake by increasing his formula from 27 calories /oz to 29 and they also increased the amount of vegetable oil he gets in each bottle. Hopefully these changes will help pack on the pounds. We're on the right track so far, he gained 5 ozs in a week and now weighs 8 lbs 8 ozs.

Professional Photos

Today we had Justin's 3 month (adjusted) and our first family photos taken. And just like his father Justin wouldn't smile for any of the pictures. Enjoy!

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Back to Work

Sadly I returned to work Monday. It would've been nice to stay home with Justin longer but after 6 months off of work it just wasn't possible financially. Honestly it really wouldn't make a difference staying home longer because it would be hard no matter when I returned. Fortunately my boss has been very flexible and is allowing me to work at home the second half of the week. And since I live so close to work those days I'm in the office I'm able to come home during lunch and get a quick Justin fix.

6 Months Later

It's hard to believe that 6 months ago Justin weighed 14.5 ozs, 10.25 inches and now weighs 8 lbs 1 oz, 18.75 inches.

1 week old

6 months

Most new moms will probably say that motherhood is an absolute joy from the day their child is born. I wish the same could be said for me. Don't get me wrong, I love my little guy with all my heart, but motherhood has been much harder than I expected. Perhaps its because I have 10 times the worries/issues of the mother of a healthy full term baby. But over the past month I've gotten to the point where I can finally relax and start enjoying being a mom. And I must say it's been GREAT!

Thanksgiving

Besides a visit from Aunt Ambyr Justin's 1st Thanksgiving was pretty uneventful. While Carl was at the game Justin was sleeping and woke up in just enough time to see the Lions lose, yet again. Here are some pictures of the one I'm most thankful for this year, enjoy.

Oh So Sweet

Medical Update

Justin's hearing test shows that he has mild to moderate hearing loss in his left ear. The doctor explained that right now he's only able to hear a whisper. At this point there's no way to know whether this loss is permanent or not so they will monitor him closely and he has a follow up appointment next month. The doctor was very optimistic, especially given the fact that his right ear is perfectly healthy, and stated that even if the loss is permanent it should not cause any developmental problems in the future.

Justin's last eye exam shows that the disease has completely regressed in his left eye but there are still 3 areas of the disease in his right eye. Those areas haven't gotten any worse but the regression seems to have stalled. The doctor says this happens occasionally but doesn't see a need for additional surgery. Fortunately the core eye functions have not been damaged and his vision does not appear to be affected. The weekly visits are now a thing of the past and he'll be seen again in two weeks.

Although Justin's hernia seems to be getting bigger day by day it has not become complicated (requiring immediate surgery). Since Justin will be on oxygen through the winter months the plan is to have the surgery to correct his hernia, hypospadias and circumcise him in April once he's completely healthy. But for now the urologist said everything appears to be growing just fine so he won't be seen again until March.

2 months adjusted

Premature birth on the rise, see how you can help‏

I received this article from The March of Dimes that I thought I'd share.

The March of Dimes speaks up for babies every day -- and on Prematurity Awareness Day, we make sure even the smallest babies are heard.

The March of Dimes has released a Premature Birth Report Card for the nation and every state. We scored a D overall because the number of babies born too soon in our country is 60 percent higher than the U.S. Department of Health and Human Services' Healthy People 2010 objective of 7.6 percent. State-by-state grades are also available in the Report Card. Visit marchofdimes.com and find out how your state measures up.

For the past few weeks, we've been asking everyone to sign our online Petition for Preemies and help us send a message to our newly elected local and national officials. Thousands of caring people have already responded. If you were one of them, thank you for your support! If you missed it, go to marchofdimes.com/petition. Don't forget, you can sign up for advocacy alerts to make sure you won't miss any opportunities in your area and nationally.

You can help by sending this message along to family and friends!

RSV Season Here We Come

After almost 2 months of fighting with the insurance company Justin finally received his first of five Synagis injections. He will receive an injection monthly during the RSV season (October through April in most regions) to increase his immunity to RSV. I know I briefly discussed RSV in a previous post but for those of you who plan to visit us over the next few months, and even if you are not, please take a few minutes to read this.

Respiratory Syncytial Virus (RSV) is a very common virus. It infects half of all children during their first year of life and by age five all children will have been infected at least once. Respiratory infections caused by RSV are most common during the winter months. While most infections are mild, RSV can cause severe illness in infants who were born prematurely or who have lung problems. Up to half of these infants who become infected need to be hospitalized for breathing difficulty. Some infants get sicker than others because premature infants and infants with serious lung conditions have underdeveloped respiratory and immune systems that are less able to fight infections. This website offers a great visual comparison of a preemie’s lungs compared to the lungs of a full-term baby: http://www.preemiecare.org/LungsTrees03-4.pdf

Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Justin safe during RSV season. The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands and up to twelve hours on objects, and it spreads very easily, especially from child to child. Studies have also shown that infants pose an even higher risk of spreading RSV to others.

You may ask, “Can’t he fight it off and build up his immune system? Kids need to get sick, right?” The simple answer is NO. Since Justin was pre-term he did not acquire the necessary immunities to fight off infection. If he were to contract RSV he could be hospitalized and develop serious complications.

We’ll be asking our visitors to follow a few guidelines to help prevent Justin from contracting RSV or any other illness. We ask that all visitors do the following:

1. When you arrive, please wash your hands and use hand-sanitizer as needed before touching him.
2. Please, if it is possible, get a flu shot.
3. Please refrain from coming over if you are currently sick and have not been symptom-free for at least 5 days, if you live with someone who is sick, or have been in close contact with someone who is sick.
4. If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting, as a preemie’s lungs are very sensitive to smoke. Most RSV sites recommend against passive smoke exposure.
5. If you are parents to a baby or toddler, please refrain from bringing them to our house during RSV season.

It was a hard decision, one that we went back and forth on many times and discussed with Justin's pediatrician, home care nurse and NICU doctors, but unfortunately we will not be attending many events during RSV season. Our goal is to make it through this and the next RSV seasons without Justin contracting RSV or any other serious illness. His lungs are still very fragile until he is 2-years-old. Please understand that this post is not meant to offend anyone, just simply to provide an explanation. We hope you understand, and we appreciate your help keeping Justin safe.

Love
Carl, Georgina & Justin

I Just Don't Get It

Justin had his last bottle at 9 o'clock last night so you would think he'd be starving when he woke up this morning. But he just barely took the 1 oz bottle with his meds and only took 1/2 oz of the remaining 2 oz bottle. And I had to revert back to the tricks used when he first started nippling in the NICU (rubbing his cheeks, holding his chin) just to get him to take that last 1/2 oz.

I just don't get it, for his weight he should be taking in somewhere between 14 and 18 ozs /day. On average he's only been taking in 11 ozs for the past week and it's been a struggle to get him to eat. He gets really fussy and starts crying at the top of his lungs so I thought his reflux was getting worse. We took him to the doctor on Halloween and they took x-rays to check his digestive tract, checked for thrush, and drew blood to check for infection. But nothing was found so the only thing they could think of was that because he's getting my frozen breast milk he could be reacting to something that I ate and recommended using infant gas drops. That has helped in terms of the fussiness but he still doesn't eat much. He is growing, slowly, so I guess that's all that matters, but it just doesn't seem right.

Growing, Growing, Growing

Justin now weighs 7 lbs and is starting to fit into some of his newborn clothes. They're a little long so all I can do is apologize for my being vertically challenged and hope that he has a growth spurt, soon, lol. There are a few preemie outfits that he's still able to wear but it's nice to move into another size. Who knows how long it'll be before he's in 0-3 months.

Cutest Bumblebee Ever

Little Pumpkin

Medical Bills

Carl and I need to open a hospital or get into health care somehow. I totaled all of Justin's medical bills from birth to date and the total is $797,498.41. That is crazy. Fortunately Justin is covered under both my insurance and Carl's but can you imagine if we didn't have any health insurance. I'm still nervous though that there will be some bills trickling through but for now we haven't got anything. But I'm not holding my breathe because this is Henry Ford we're talking about. I just got a bill for services rendered in 2006 so who knows.

Go State!

Justin had his first play date with Kelicia's son, although I guess it wasn't much of a play date since they both slept through most of the MSU/U of M game. But in honor of the two newest Spartan fans MSU finally beat Michigan after 7 years. Rebuilding year my a**, lol! GO STATE!

Nickname for Justin

I wasn't searching for a nickname for Justin, I just thought a poll would be fun since there are so many names floating around for him already. Carl's mom calls Justin JC (Justin Carl), my sister calls Justin JJ (Justin J****), and one of the NICU doctor's started calling Justin J squared. We referred to Justin as Peanut when I was pregnant and I started calling him Buddha when he was born because he has a nice big round Buddha belly. It's funny because on x-ray all you would see is his huge stomach and bones, lol.

Just Chillin

MicroPoll : Which nickname do you prefer for Justin?

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Such a Big Boy

Justin weighs 6 lbs 4 ozs and is 16 inches long.

1 Month Adjusted

Big Boy Bath

Here are pictures from Justin's first bath in his big boy tub. Don't be alarmed by the size of his privates, that's his hernia.

No Longer a Milk Cow

So I stopped pumping a couple of weeks ago. After Justin came home it got to be too much feeding him from a bottle and still pumping. I felt guilty but at the time I stopped only 2 out of his 8 feedings were breast milk and I was barely making enough for those feeds. When he was readmitted to the hospital they started him on full breast milk feedings so I tried to get my supply back up but it was too late and my milk had already dried up.

I had already accepted the fact that I would probably never get to breastfeed. From discussions with the lactation consultant and research of my own I knew it was easier for Justin to bottle feed than breastfeed. The times I put him to breast in the hospital he was able to latch on and suck but he was never able to get any milk. And the few times I tried to put him to breast after he came home he never latched on and would give me this look like “Are you serious”. Fortunately I had been freezing my milk from the day he was born so I have a good amount of milk on hand and hopefully it’ll last a couple more months.

Third Times A Charm

Justin came home today weighing 5 lbs. It's not realistic for him to stay in the hospital until he builds up his immunity because he'd probably have to stay until he's 2. But there are additional precautions that are being taken to prevent him from getting really sick again. He was sent home on daily breathing treatments to help with his lungs and will receive these through the end of winter. And because of his prematurity he'll be able to receive RSV (respiratory syncytial virus) treatments. RSV is a very contagious virus that gives most people a plain old common cold. But in infants, especially preemies with BPD (chronic lung disease), which Justin has, it can be more serious.

People can still come and visit but we'd like to space out visits so he doesn't get overwhelmed with a lot of people too soon. Ideally I'd love for everyone to gown, glove and mask up before holding him but I do realize that's a little extreme. But anyone wanting to hold him will have to wash their hands and no kissing or touching his hands is allowed.

Justin Pixs

Just a few pictures of Justin taken before he went back to the hospital. Doesn't that last one look like a deer in headlights, lol. He's got big eyes like his daddy.

Justin's Visit With Grams

My mom left this morning and I'm sad. Unfortunately she was only here for 3 days before Justin was re-hospitalized so her visit didn't go quite as planned. She was a great help with cooking, cleaning and doing little odd projects around the house. But most of our time was spent at the hospital and things were a little tense/stressful because of the circumstances. I was hoping that once she saw her grandson she would have a change of heart and move back home to spend more time with him. Deep down I knew it would never happen but I can dream, right?

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!!

Week 13 Update - Thursday, August 28, 2008

Justin had his first exam with urology to look at his hernia as well as determine whether or not he has hypospadias. In short this condition deals with the incorrect positioning of the urethra, but in case you're interested I've posted a link to an article about this below. But because he's so small they couldn't confirm for sure but they do believe he does have it so he will need to be seen by them again in November/December. Surgery will be performed on the hernia and hypospadias approximately 6 months after his original due date of September 14th, unless complications arise.
http://www.urologychannel.com/pediatric/hypospadias.shtml

Justin's head ultrasound showed that the grade 1 bleed has resolved itself.

In anticipation of being discharged Justin's oxygen is being weaned. He was switched from a 2 liter flow where he was receiving 21-29% oxygen to a 1/8th liter at 100% oxygen. I can't really explain much else because I don't totally understand it myself but the nurse practitioner said this is a good thing so that's all that matters to me.

Justin's eye exam looked good for 1 week post op. Although the disease is still present the doctor saw a pattern of regression. He will continue to monitor the progress on a weekly basis but he was happy with the results so far.

Justin now weighs 1476 grams (3 lbs 4 oz) and his feedings were increased to 30 ml every 1 1/2 hours. The doctors are very happy with his weight gain. But since he continues to have some residuals they've reduced his caloric intake and are trying to find a good balance between the two. Justin is now nippling 3 times a day and each time I've fed him he's taken all of his bottle. Hopefully it won't be long before he's on full bottle feeds.

Week 12 Update - Thursday, August 21, 2008

Since Justin's doing so well nippling once a day (in addition to his mom's persistence, lol) he is now being nippled twice a day. He's doing pretty well with the 2 bottle feedings and takes most if not all from the bottle.

Justin had surgery on his eyes on Thursday. Unfortunately he was intubated and put back on a ventilator for the surgery. Since he's so little the anesthesia often makes it hard for smaller babies to breathe on their own. But in true Justin form he pulled the tube out only an hour after being brought down from the operating room. Overall he tolerated the surgery pretty well but was a little groggy afterwards and his eyes still seem to be a little irritated. We won't know if the surgery was a success for a few weeks but the doctors will examine his eyes next week.

Justin now weighs 1357 grams (2 lbs 15 oz), only 4 grams shy of 3 lbs. His feedings have been increased to 28 ml every 3 hours.

Requirements for Discharge

Since many people are asking when Justin can come home I thought I'd post the requirements for discharge:

• is gaining weight at a rate of 15-30 grams per day
• is able to maintain his body temperature in an open crib
• has had no significant apneas (stops breathing) or bradycardias (heart rate under 60 beats per minute) for at least five to eight days
• is able to take all of his feedings from a bottle or breast

Since they started adding Polycose (sugar supplement) to his feedings Justin's weight gain has been pretty consistent and ranges from 8 grams to 111 grams.

Justin won't be put in an open crib until he reaches approximately 1,500 grams and is taking all of his feedings from a bottle.

Justin has had a few apneas and bradycardias since they stopped the caffeine treatments but nothing too significant.

Justin is being nippled for two out of his eight feedings but he may not always take the entire bottle. I never really thought about it but it takes a lot of work for a baby to eat, trying to coordinate sucking, breathing and swallowing. So sometimes he's too tired or has been overstimulated from eye exams, physical therapy, etc.

Justin's Nursery

Justin's airplane and helicopter nursery is finally finished and Carl and I are really happy with how it turned out. We decided not to paint his room the traditional nursery/baby colors because we wanted something that could hopefully grow with him. But now Justin's room looks better than the rest of our house so we need to redecorate, lol.