NICU Reunion

Saturday we went to Justin's NICU reunion.  Unfortunately J was in a mood; outside of being excited while riding the train he had a pretty funky attitude towards the nurses and Dr's.  And I was sad that we didn't get to see his primary care nurse Rosette.  But since we missed last year because J and I were sick it was nice to catch up with nurse Charlotte who was training with Rosette when J was born, along with the Dr's and other nurses who lovingly cared for J during his LONG NICU stay. 

DAC Appointment

Weight: 23.2 lbs, less than 5th percentile
Length: 31.5 inches, less than 5th percentile

Thursday Justin had an appointment with the DAC (Developmental Assessment Clinic) which is run by the neonatologists at the hospital where he was born. They were responsible for all of his medications, oxygen, nebulizer treatments, etc. so needless to say he had frequent visits after he was discharged from the NICU. They also monitor his developmental progress, thus the name, lol.

But I was pretty nervous about this appointment. Even though I think J has made great strides (all things considered) and seems to be on track developmentally I was worried about what the Dr's would say. Sure I can tell them all the things he's doing, but of course there are some things I may forget. And it's hard to get a full picture of where a child is developmentally just from an hour long appointment. And obviously there's the issue of his size and weight gain.

The occupational therapist evaluated Justin first and J did great. He stacked blocks upon request and then had a ball putting various sized pegs in the right holes. When the OT put it away he walked over to the OT's bag and pulled it back out. He was able to put shapes in the proper spots and called out each shape as he did it, except for triangle which he can't say. He got upset when the OT switched sides and sizes on him to see if he could put smaller shapes in the correct spots. Of course we all know how much J loves balls so when the OT brought one out he smiled and ran towards him yelling ball.

Then Dr. E and Elaine, one of the nurse practitioner's, came in and examined J. We discussed the OT's assessment. Overall J's doing pretty well, he's excelling in some areas but is behind in others (i.e. does not throw or kick balls, use 2 or 3 words together or ask for items by name). Since he still sees a Special Education teacher through the Early On Program they weren't concerned about his gross motor skills and cognitive learning. But they'd like him to get a speech evaluation, so I scheduled an appointment for the 1st week in December.

Diet wise Dr. E was happy. He asked about his activity/energy level and when I told him how active J is he said that's a good sign because kids who aren't getting what they need nutritionally would be lethargic and non-responsive. And although J is small for his age I FINALLY got someone to say "yes, he's small, but now we look to genetics". That being said we have a GI appointment Friday so we'll see what she says, but it should be good. J's eating has improved tremendously and he's gained 3 lbs since his last appointment a month and a half ago.

Here are some pictures while we waited to be seen. J loved scribbling on paper with Grandpa Smitty's pen. I think J may be left handed like me but he kept switching hands when he was writing so we'll see.

NICU Reunion

Justin definitely made his mark during his 116 days in the NICU. Not sure if it's the fact that he was the smallest baby ever born in that NICU or his eyelashes that everyone seems to notice from across the room, but all of the NICU staff were excited to see J and hear how well he's doing. And it was funny to hear them say "oh, he's so big". I'm not used to hearing that, but obviously no one knows better than them how far he's come. We enjoyed visiting with everyone, but were especially excited to see Rosette, J's primary care nurse and Charlotte, who trained with Rosette. J was Charlotte's first micro preemie, first baby on a ventilator, pretty much first everything.

This free photo collage made with Smilebox

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.

Week 11 Update - Thursday, August 14, 2008

Justin did pretty well with this weeks physical therapy. He tolerated more of the developmental exercises, showed interest in nippling (feeding from bottle) and they noticed that his sucking reflex is pretty strong so they started nippling him once a day. The first few times didn't go so well but when I fed him today he took 18 of his 23 mL feeding from the bottle.

Justin's eye exam this week showed the beginnings of stage 3 ROP. Last week it was in one eye and was only located along the ridge of his nose but now it's in both eyes and has spread around the eye. It hasn't reached the + stage which requires treatment but they'll examine again early next week as they are concerned at how quickly it's progressing.

Justin's current weight is 1035 grams (2 lbs 4 oz). His feedings were increased to 23 mL every 3 hours. Even though he's reached 1000 grams he will remain on full formula feedings until he's 90 days old (only 13 more days to go). The main reason is that they want him to gain more weight, but also at that age he should be able to better tolerate additional supplements or fortifiers that may need to be added to my milk.

JUSTIN'S FIRST FEEDING

Week 10 Update - Thursday, August 7, 2008

Justin did well with his physical therapy this week. He's showing more interest in his pacifier and is moving his head and legs pretty well. I'm no doctor but it doesn't look like he'll have any developmental delays the way he's moving around. But then again he is his mother's child and I've been told I was a very busy/active baby.

Justin had his 4th eye exam this week which showed stage 2 ROP so he will be monitored more closely from this point on.

Justin's current weight is 910 grams (2 lbs). His feedings were increased to 19.6 ml every 3 hours. At the beginning of the week he was losing weight so he was switched to full formula feedings until he reaches 1,000 grams. At that point the doctor said he can have whatever he wants, lol.

Week 9 Update - Thursday, July 31, 2008

Justin finally came off of the ventilator on Saturday and is doing really well breathing on his own. Because he's still so small the nasal cannula is big on him but it's nice to see more of his cute face. Of course I'm biased, lol.

Justin had his 3rd eye exam which showed Stage 1 of ROP. In short this means that they're noticing a change in his retina. Treatment (surgery) will be required once it reaches Stage 3 +, so they will check his eyes again in two weeks.

Justin started physical therapy this week to make sure that he's hitting all of his developmental milestones. The physical therapists said that he didn't tolerate it well. He's still pretty fiesty and doesn't like to be bothered much.

Justin now weighs 835 grams (1 lb 13 oz) and his feedings have been increased to 17.8 ml every 3 hours. Earlier in the week the decision was made to start alternating my breast milk with formula and it seems to be making a difference as he gained 115 grams after the change.

Highlights of the Week

Now that Justin's on a nasal cannula we were told that we could bring in some onesies for him to wear. The preemie clothes are huge on him and swallow him alive but it's definitely nice to see clothes on him.

Justin's personality is starting to show and he's smiling and laughing. It's the cutest thing to look down at your baby's face and see them smiling at you.

Week 8 Update - Thursday, July 24, 2008

Justin is doing really well on the nasal c-pap. Last week he was receiving 20 breaths per minute and a mean pressure of 5 but is now weaned down to 10 breaths per minute and a mean pressure of 4. The hope is to wean him down even more in the next few days and try him on nasal cannula. A nasal cannula is used when just a bit of oxygen is needed versus the c-pap which provides oxygen and pressure to help keep his lungs open and expanded.

Justin now weighs 705 grams (1 lb 8.5 oz). For his gestational age (32 weeks) he should be at least twice this size. So they have increased his feedings to 14 ml every 3 hours and upped the breast milk plus Neosure, the food supplement which is added to my breast milk, from 24 to 27 calories. If this doesn't fatten him up they will probably start alternating my breast milk with formula since it's possible that my milk could be diluted and not providing the amount of calories needed for consistent growth.

Highlight of the Week
After 8 weeks I finally heard my baby cry for the first time and it was music to my hears. The first day after pulling out his tube he made an attempt to cry but it was more like a squeak, lol. But just a few days later I heard him really cry and it was the cutest thing. So someone please remind me once he comes home and is crying at 3 in the morning and waking me up just how cute I think his cry is.

Week 7 Update - July 17, 2008

Justin finally had enough of the breathing tube so he pulled it out Monday evening. When they evaluated him to see if they could try him out on the nasal c-pap it was determined that he was working too hard to breathe so he was reintubated. But our little guy figured he knew better because he pulled it out again Wednesday morning and this time they decided to try him out on the nasal c-pap. The doctor mentioned that the first 48 hours are pretty telling as to whether or not he'll need to be reintubated or if he'll continue on the c-pap. But 36 hours in Justin seems to be doing pretty well and his blood gas results have been good.

Justin's feedings have been increased to 12.6 ml every 3 hours. He had his second eye exam which showed no change so they'll continue to examine him every 2 weeks to make sure he's not developing retinopathy of prematurity (ROP).

Justin now weighs 650 grams (1 lb 6.5 oz). Although he is slowly gaining weight the doctors would like to see him gain 18 grams each day. So they're thinking about alternating between breast milk and formula to ensure that he's receiving enough calories.

Week 6 Update - Thursday, July 10, 2008

Justin had a minor set back in being weaned off of the ventilator. His last few blood gases (blood test used to tell how well his lungs are functioning) have not been that good so the amount of breaths he's receiving was increased from 25 to 50. The nasal c-pap won't be tried again until he's weaned down to 15 or 10 breaths per minute or he self extubates (pulls out the tube on his own).

Justin developed an inguinal (meaning in the groin area) hernia. Hernias are very common in preemies, but unfortunately won't go away unless it is repaired surgically. So add this on to the list of surgeries he will need. This one will more than likely be after he's discharged, unless complications arise.

Justin's now receiving 11 ml of breast milk every 3 hours. The human milk fortifier (HMF) which was being added to my milk was replaced with another supplement since he was not tolerating the HMF well. They've also added iron and fat supplements to my milk.

Justin now weighs 610 grams (1 lb 5.5 oz)

Week 5 Update - July 3, 2008

On Friday Justin's tube was inadvertently removed so they tried him on the nasal CPAP (another method of delivering oxygen and pressure) but unfortunately he wasn't able to keep his stats up so he was reintubated. They will retry him on the nasal CPAP once he gains more weight. They'd like to see him reach 600 grams before they try again. As busy as he is I'm betting he'll probably pull the tube out on his own before he even reaches 600 grams.

Justin had his first eye exam this week, since the blood vessels which supply the retina with oxygen sometimes don't grow as planned after a premature birth. Abnormal growth of vessels can block out light and damage the retina by pulling on it and possibly causing the retina to detach from the wall of the eye. The doctor said his eyes are immature but there are currently no abnormalities. They will continue to monitor his eyes every two weeks since the question is not "if" he'll need surgery but rather "when".

They removed the PICC line (IV) so Justin is now strictly on breast milk feedings. He's now receiving the maximum feeds for his weight of 10.6 ml every 3 hours. Human milk fortifier is being added to my milk to increase his caloric intake and help promote weight gain.

Justin's weight is 570 grams (1 lb 4 oz)

Highlights of the week
Watching Carl hold Justin for the first time was priceless. Carl had a permanent smile on his face from the moment they placed him in his arms.

Week 4 Update – Thursday, June 26, 2008

This was a pretty good week for Justin. He was even called boring by one of the nurse practitioners because he’s the most stable out of all the little ones currently in the NICU.

On Sunday Justin was switched from a high-frequency ventilator which provides tiny quantities of air at rapid rates using lower pressures to a conventional ventilator which uses high pressures to deliver breaths and maintain a relatively normal pattern of inhalation and exhalation. He has been responding pretty well to the switch with minimal desats so they have been able to decrease the amount of oxygen he’s receiving and the amount of breaths they’re providing has been decreased from 60 breaths per minute to 20. They hope to wean him off the ventilator this evening and switch him to a nasal c-pap tomorrow morning.

Breast milk feedings have been increased from 1 ml every 6 hours to 4 ml every 3 hours. Justin has been tolerating his feedings really well with very minimal residuals (meaning he is digesting his milk) so the plan is to increase feedings by .5 ml every 12 hours.

Justin was moved to the isolation pod as a result of his staph infection and will more than likely remain there until he is discharged. Additional tests will not be performed unless he shows any signs of illness. He also had a repeat head ultrasound this morning which showed the same grade 1 bleed so no more ultrasounds will be performed.

Justin’s current weight is 530 grams (1 lb 2 oz).

Highlights of the week
Holding Justin for the first time was the best feeling in the world. I can’t wait for Carl to experience it this weekend.

Justin had his first poopy diaper on Friday. I’m sure I won’t be as excited about them once he comes home and I’m changing them on a more regular basis but for now this is a huge milestone.

Week 3 Update - Thursday, June 19, 2008

After the “episode” on Monday Justin was started on steroids the following day to help mature his lungs. A significant improvement was noticed in his chest x-ray taken on Wednesday and the number of desats has decreased drastically.

This week’s tracheal culture is now positive for the staph infection which Justin developed last week. Fortunately, as a result of suspicious lab results this past weekend, he was already started on antibiotics to help fight off any potential infections.

Justin’s current weight is 540 grams (1 lb 3 oz) and his length is 10.6 inches.

Highlights of the week
Breast milk feedings were resumed since there is now a noticeable amount of gas in the stomach.

Week 2 Update - Thursday, June 12, 2008

Test results show that Justin’s jaundice has gone away so he was taken off of the photo therapy light treatment. The head ultrasound taken on Monday showed a Grade 1 bleed which the doctor stated is of no consequence because that type of bleed is very small and will resolve itself, but another head ultrasound will be done in two weeks. His chest x-ray has improved and shows that his lungs have expanded. They are starting daily diuretics to help increase the excretion of water from the body, which will help the lungs.

Justin developed a staph infection this week. Of course I was freaked out about it but the nurses said that this is something very common for preemies and assured me that this was nothing to be highly concerned about. His infection is colonized in the nose, is not in any of his bodily fluids or blood and all tracheal cultures were negative. But they will continue to monitor and test for any changes.

Justin’s current weight is 450 grams (15.9 oz), which was down from 490 (1 lb 1.5 oz) on Wednesday. The doctor mentioned that because his growth was restricted in the womb he will more than likely have a slow growth rate. Now that he is two weeks old the goal is to focus on weight gain, so they are increasing his caloric and protein intake.

Highlights of the week
On Monday they started breast milk feedings, but suspended them the following day because the chest x-ray showed that there is no gas in the stomach and he has yet to have a bowel movement.

Carl and I were able to change his diapers, take his temperature, change the pulsox sensor, and clean his mouth.

Justin is now wearing big boy preemie diapers. Previously he was so small that they had to make his diapers out of gauze bandages.

Week 1 Update - Thursday, June 5, 2008

Justin’s first week of life went pretty well. All lab results are moving into the normal range, his red platelet levels are good, and his white platelet levels have increased significantly so he is now able to fight off infection on his own. Within the next day or so he will be taken off of the photo therapy light treatment which was used to treat jaundice. A head ultrasound is scheduled for Monday to rule out any bleeding in the brain. He is on day 3 of a 7 day antibiotic treatment and is responding well. He does not currently have an infection but the doctors wanted to err on the side of caution and treat him proactively. His chest x-ray, which is done on a daily basis to check for proper tube placement, as well as to check the development of his lungs, was good. Justin did loose weight (2 oz.) after birth, but all babies lose weight in the first ten days or so of life. His current weight is now exactly 1 lb, but at this early stage his weight will fluctuate because preterm babies lose more water through the skin or respiratory tract than babies born at full term. The highlight of the week was when he opened his eyes. He didn’t open them completely, so I still can’t quite tell what color his eyes are, but nonetheless it melted my heart.