Finding the right Formula

After Josh's troubles last weekend he was placed on plain breastmilk for a few days with no fortifications. This was done to help his digestive tract rest a little bit. Unfortunately, because he is a preemie, he needs extra minerals and fortifications to help him with proper growth due to missing out on these minerals in utero. Wednesday they tried adding back in some formula to his milk and once again had some blood in his stool. They immediately put him back on plain breast milk and he recovered and had several normal stools. Today they are going to try him on a brand new formula to see if he can tolerate that. If not we will have to go back to the drawing board.

Today is also a sad day for Josh as his primary day nurse Teena is retiring. She has taken care of Josh 2-4 times a week since his birth. We will miss her but we want to wish her good luck and we hope she enjoys retirement.

Josh loves to pull his arms out of his swaddle

Twelve Weeks Old

We have now spent 84 days in the NICU or 12 weeks. Josh is back up to full feedings and they will begin to add in some extra calories. Even without the extra calories he has been gaining weight so we hope they don't have to go back up to the super high calorie formula he has been on in the past. His reflux also is less on plain breast milk we hope that adding back in extra calories won't make his reflux worse. He now weighs 6 lbs. 10 oz and he has outgrown all of his preemie clothes. We have no entered a frustrating stage of being at the NICU where he seems ready to go home if not for the reflux (and accompanying brady's) and being able to consistently take full feedings from the bottle. One thing we are trying is to hold him upright for 30-60 minutes after his feedings or to put him in his car seat which keeps him at a better angle.

Josh with Frog Take Three

Josh with Frog- Four days old

Josh with Frog- Forty-Four days old

Josh with Frog- Eighty-Four days old

Tummy Troubles Part Two

This weekend was a stressful one as Josh exhibited signs of being sick, thankfully everything appears to be okay but he is being monitored closely.

Thursday afternoon Josh had blood in his stool which is a warning sign of a possible infection. This is not taken lightly so immediately he was given an x-ray and all additives were taken out of his milk. The x-ray did not show signs of an infection but also did not look normal. That evening his nurse thought he was acting a little strange and he still had some blood in his stools. The doctor decided to make him NPO (nothing per mouth) which means that all of his feeds were stopped and he was given IV fluids only. This is done to rest the digestive tract. At the same time he had labs sent out to test for inflammation and infection.

On Friday he had a repeat x-ray and again things looked unusual but there was no visible sign of infection. He was still acting normal (just hungry after having no food in his stomach) and his labs came back normal. His x-ray showed dilation in his intestines and the radiologist was concerned so he was put on antibiotics.

Saturday morning he had one more x-ray and although his intestines were still slightly dilated it looked better than the day before. The doctor decided to start him back on feeds of plain milk and to slowly build him back up to full feeds. He is still being monitored closely but he acts like he feels fine. Today he should get his IV out (which is in his head) and be back on full feeds. If he shows any signs of distress or there is more blood in his stools he will go back onto NPO status with just an IV.

Josh also continues to have reflux problems which in turn causes him to have apnea and bradycardia episodes. Right now these episodes are bad but not severe enough to warrant giving him medicine for reflux. The hope is that as he gets older and more mature these problems will decrease.

Josh with a funny IV "hat"

Tummy Troubles

"Tummy Troubles" is probably not the best description of what Josh is going through but it sounds better than acid reflux. Because of Josh's prematurity the valve at the base of his esophagus is still developing and thus, he gets acid reflux when he eats. The reflux causes him to be uncomfortable and to sometimes choke which in turn leads to apnea and brady's. We are trying to help him by sitting him up when he eats and afterwards and not pushing him to eat too much from the bottle. The hope is that as he gets bigger he will outgrow some of these issues. If the reflux continues he may need medicine to help bring it under control. The reflux is scary because Josh rarely cries, even when he spits up he is silent so often our only indication of a problem is that the monitors go off. 

The results of Josh's echo on Tuesday came back inconclusive. This means that the cardiologist was unable to see if he had a hole between the atrium. At this point the NICU doctor's are unsure of what they will recommend. He may have another echo before he comes home, or we may be referred to a pediatric cardiologist.

Josh wearing "big boy cargo" pants

Six Pounds

Today is day 77 (or 11 weeks) since Josh was born and it'a amazing to see the changes.
Josh has been growing in leaps and bounds and now weighs just over six pounds. He has outgrown his preemie diapers and clothes and is just starting to fit into the newborn sizes. His weight is right around the 50% percentile while his head circumference and length are hovering between the 25% and 50%. His head should round out more now that he does not have to wear the restrictive c-pap hat.

Yesterday he had an ultrasound on his brain and everything is developing normally. He had some extra fluid on the right side but the doctor's felt that it was normal and nothing to be concerned about.

Josh is still learning to wake up for his care times and take a bottle but he is getting better at this. A good way to get him to eat more his to lean down towards his face and go "nom, nom, nom" :).

36 Weeks Gestation

Josh has finally hit 36 weeks gestation which is means he will have a busy week. He is closing in on six pounds and his about 17 inches long.

Friday he had his third eye exam which showed the same results, immature eyes but no ROP. He will continue to have eye exams every two weeks, even after he comes home, to monitor the growth of his eyes.

Saturday he had what they call a Hood Oxygenation Test. They took out his nasal cannula and placed him under a plastic hood which had oxygen pumped into it. They were then able to observe how much oxygen he would need to breathe in a regular environment. His results came back at 23% oxygen which means that he has no signs of chronic lung disease. This was great news and everyone was shocked because he did not get any steroids before he was born. If we lived at a lower elevation he would probably not need extra oxygen at all.

Today he will have an ultrasound on his head to evaluate how his brain is growing and tomorrow he will have an echo-cardiogram. The echo is for the research study he is part of but it will also look to see if he has a hole between the left and right atrium. This was observed back in June but the doctor's weren't sure at the time if this was a hole that would close on it's own or if it's a heart defect.

This weekend Josh also got to meet his Uncle Andy and his cousin Jeremy. The rest of his time was just spent sleeping, eating, and growing.

Family Photo

                                               New Family Photo before Josh's bath :)

Why did you wake me up?

This is the look we get from Josh when we wake him up to do his afternoon exercises...

Big Weekend

Big things happened this weekend which could speed up the timetable for Josh coming home.

On Friday he received his last dose of caffeine, one week earlier than we expected. He is now in the seven day period where the caffeine leaves his bloodstream. He is still having 1-2 brady's a day but the doctor's say most babies begin to outgrow these around 36 weeks gestation.

Yesterday he took his first full feeding from a bottle. Although he is not ready yet to take all feedings this way it is a big step. He also tends to wake up around his care times (every three hours) which is a good sign that he is getting hungry around the time when we want him to eat.

He was also moved to low-flow oxygen on Sunday after only one week on the high-flow. This is just straight oxygen with no extra pressure for his lungs. They started him at 40% oxygen yesterday morning and he was already down to 30% oxygen by mid-afternoon.

The next big things are another eye exam on Friday, and a brain scan next week to make sure everything is developing properly. We are also going to work with him on strengthening his neck and legs with different exercises.

Steps to coming home

We get asked all the time when Josh will be ready to come home and the answer is that we really don't know. Initially we were told that we could expect him to be in the hospital until around his due date (September 15) but it could be sooner or it could be later. These are the steps he needs to take to be ready to come home.

1. Maintain his body temperature- This was the first milestone reached when he hit the 4 lb mark.

2. Take full feedings for all meals from the bottle- In the last few days Josh has shown interest in the bottle and has taken anywhere from 15-20 mls from the bottle at about a third of his feedings. Right now a full feeding for him is 45 mls.

3. Go from the high flow nasal cannula to a low flow nasal cannula. Currently he is on a flow of 2 liters and this will need to decrease to 1/8 of a liter and then they will put him on low flow oxygen.

4. Be off his caffeine and have no incidents of bradycardia for five days. When he is about 36 weeks gestation (one week from now) they will try taking him off the caffeine and seeing how he does. The caffeine remains in his bloodstream for a week and then after that time the five day countdown will begin. If he drops his heart rate any time during this five day countdown they start over with a new five day countdown.

5. Smaller things- pass his eye exam, hearing test, car seat test, sleep without extra support around his head or feet, etc.


And now, a new picture :)

Staying off the c-pap

Josh has been doing really well off the c-pap so far. Hopefully we have made it past the critical point and he will be able to remain on the high flow nasal cannula. Right now he is on a flow of 2 liters and they will eventually wean him down to 1/16 of a liter. Then he will go home on oxygen with a low flow (no extra pressure). They have also moved his feeding tube to his nose which means he will be ready to try bottle-feeding soon.

Josh has lost a little weight due to the Lasix which is good because he is less puffy. He will probably have to go home on a diuretic to help him with the common problem of edema.

Trying it off the c-pap part three

Third time's the charm, or so we hope. For his two month birthday Josh is trying it on the high flow nasal cannula again. We hope that this will be the time when he is able to stay off of the c-pap for good. They will wait to change his feeding tube to his nose until they are sure he has adjusted well to the high flow.

I'm two months old!

This weekend he also had his second eye exam which came back with good news, he still have immature eyes but no signs of ROP (Retinopathy of prematurity). This is good news and he gets to go another two weeks without another eye exam. Josh also had his first set of immunizations on Saturday and got through them with no side effects.

Earlier this weekend we thought Josh might need another blood transfusion as his hematocrit levels (red blood cell count) was low, but after testing it again it came back in the low range but not dangerously low. The doctors did another test and found that he is producing his own red blood cells now so we hope he won't have any more major problems with anemia.

Baby of the week

Every week the NICU chooses a baby to highlight as "baby of the week". This week is Josh's turn and he gets his picture on the board at the front of the NICU. It says his age, weight, what he wants to be when he grows up (a concert pianist and pro golfer) and his favorite thing to do (pull on his tubes).