Trying it off the c-pap part two

A week has passed since the last attempt off of the c-pap so they are trying Josh again on the high flow nasal cannula. We hope that this time he will do well enough to stay off the c-pap but if he has a lot of bradycardia they will put him back on the c-pap for another week.

Josh just hit the five pound mark and is growing well. He's still puffy so they are trying to give him the right amount of calories without too much extra fluid.  But, his growth remains on the 50th percentile line which is right where they want to keep him.

Update: Josh is back on the Cpap. After trying to change his gavage to his nose he got upset and was no longer tolerating the high flow.

Exciting Weekend

An exciting weekend was had by all;
 Josh was moved to a crib since he is now able to maintain his body temperature. He is closing in on 5 lbs, clocking in at 4 lbs 13.8 oz yesterday. This week they will try him off the c-pap again and see if he does better this time. He will also get his two month vaccinations at the end of the week.

About to get weighed

Yesterday we learned how to give Josh a bath and did that with some nurse supervision. Although he regularly gets a bath we have just missed all previous bath times. The technique they use at the NICU is a swaddled bath. So we wrap him in a blanket inside the bath tub and just wash one extremity at a time. This helps keep him calm and from flailing around but it is definitely a two person job to keep him wrapped up and bathe him at the same time.

The Saturday nurse had an exciting day as Josh had two diaper blowouts in his bed, requiring new sheets twice and a thorough scrubbing of the wall next to the crib.

Josh's new digs

Two Kilos

Josh is getting big and has surpassed the two kilo mark weighing it at a whopping four pounds and eight ounces. He is able to maintain is body temperature fairly well and will be ready to move to a regular bassinet as soon as he is able to permanently transition off of the c-pap. He was able to stay off the c-pap for 14 hours on Monday before struggling with bradycardia episodes. They will leave him on the c-pap until at least next Monday before trying him on the high-flow nasal cannula again.

Evan, Josh, and I have now spent 52 days in the NICU (just over seven weeks). You know you are a regular visitor to the hospital when most of the valet workers recognize us and our cars and comment on how we drive two blue Toyotas :).

Trying it off the c-pap

Much to our surprise the doctor decided to try Josh off the c-pap yesterday and he was doing pretty well. They will continue to try him on the high flow nasal cannula but keep the c-pap machine handy just in case he gets too tired or has problems. He really likes being off the c-pap and having the ability to move his head around. He showed us how strong he was by turning his head from the left to the right while on his tummy. If he tolerates the nasal cannula they will give him a new feeding tube, one that goes through his nose, and is supposedly easier for him to handle. Update:Josh was able to stay off the c-pap for 14 hours. They will try it again in a few days.

First Eye Exam

Last Friday Josh had his first eye exam and the results were good. The doctors found that he has immature eyes (to be expected) but currently no signs of ROP (Retinopathy of Prematurity). ROP occurs in about 50% of premature babies, especially those with a low birth weight. It is caused by the disorganized growth of blood vessels and can lead to scarring or retinal detachment. Because his eyes are still developing they will do another eye exam in two week, but the news is good for now.

Josh is continuing his strong growth rate pattern and now weighs 1900 grams or 4 lbs 3 ozs. He is still getting extra calories, protein, iron, and minerals added to his milk to help him continue to grow and mature. For now he will remain on the c-pap which he still needs to help him breathe. The next step will be to transition him to a high-flow nasal cannula which provides extra oxygen and some air flow to help keep his lungs open.

We have also been trying to get him interested in his pacifier and in turn feeding from a bottle. So far he has shown zero interest in the pacifier. After trying to give it to him yesterday he just stared at us like we were crazy and then passed out for a long nap.

Josh's clothes are just a "little" too big still.

Josh with Frog Take Two

Josh at Four Days Old

Josh at Forty-Four days old

Closing in on Four Pounds

Will today be the day Josh hits the elusive four pound mark? He currently weighs 1760 grams or 3 lbs 14 ozs. In the last few days he has gained an average of 40 grams a day but some days he only gains 10 while others he gains 75! Yesterday his cpap was turned down to a lower setting again and the doctors seem to think he may be off the cpap in the next week if he does well. He's been going through the same problem as last week of having larger aspirates after they feed him so his feeds have been decreased slightly. Once he is off his cpap he should have less air in his belly and more room for his food. Part of the problem is every few days he has difficulty stooling and needs a glycerin enema, and even though he might not like the enema it does help him.

Last night we had our first experience with dressing him inside the isolette. This is definitely a two person job because we have to reach through the armholes and then maneuver around all the tubes. The one help is that he is still swimming in his clothes which makes it easier to snap around him when he is being a squirmy monkey.

Growing Fast

It's amazing that just a week ago Josh broke the three pound mark because he is quickly closing in on four pounds. Yesterday he weighed 3 lbs 11 oz. In the last few days he has gotten to wear his first set of clothes which fit length wise but are still a little big in some areas. They just increased his calorie intake to 24.5 calories per ounce and they have started adding protein to his milk. The protein will also help him with his water retention as he has become a little puffy. His c-pap was turned down slightly yesterday so hopefully they can begin weaning him off it and get it removed in the next few weeks.

Much to the nurses chagrin he has also had two major diaper blowouts in the last two days. Luckily for mom and dad we weren't changing his diaper at that time :)

                                                                                            Getting a new c-pap mask.

Hello Everyone :)

5 Weeks in the NICU

It's hard to believe but Josh has now been in the NICU for five weeks. In some ways it's flown by but in some ways it has seemed like forever. Hopefully the large aspirate problem has been solved by adjusting his feeding schedule, he now gets his food over 2 hours and they found that if they wait to "vent" his tube for 30 minutes it allows time for him to digest the food and yesterday he was only have aspirates of 1-2 ml. Today his feeding amounts will go up to 28 ml every 3 hours and his milk will be fortified to 24 calories. Hopefully Josh will start eating more and we'll start going through the ~100 bags of milk we have frozen at the NICU and at home.

The doctor's are still watching Josh closely to make sure he is eating and stooling properly but everything seems to be going well. He is getting glycerin enemas once in awhile and he has "c-pap tummy" which means his tummy is distended with air, but it is still soft and he has good bowel sound movement.

He has done better with tolerating being out of the isolette and we are trying to increase the time we hold him everyday as long as he remains stable and happy.

Three Pounds

Who would have thought a month ago that we would be having regular conversations about aspirates, stools, and reflux? But, here we are and these seem to be normal conversations these days. Yesterday Josh hit the 3 pound mark which means he has gained more than half his birth weight in a month. We learned that in order to move into a regular bed he will need to reach a weight of at least 1800 grams. Right now he is about 1375 grams so we've got a ways to go but he's on his way.

Unfortunately he is now having trouble digesting his milk and is having large aspirates (food left in his stomach after a feeding). The doctor thinks he is not stooling properly and they have given him some enemas to help flush his system. They are thinking about giving him some contrast dye and watching how it goes through his digestive system. Supposedly this can help clear things out and it will also let them know if he has any blockages or narrowing in his intestines. To help his aspirates and reflux his bed is now at a large incline and they are giving him his food more slowly, over two hours.

Yesterday we learned "infant massage" which is something we will try to do every day when we visit. It consists of light strokes on his head, back, legs, shoulders, and arms. He seems to really enjoy it and it helps him to relax.

One Month Old

Today Josh is one month old, and 29 weeks 5 days gestation. Since his blood transfusion everything has been going great. He is back up to full feeds and they will start fortifying his milk again with extra calories today. He still weighs about 2 lbs 14 ozs but that should increase now that he is back to full feeds again. His c-pap levels have been turned down slightly and in a few days, if all goes well, they will wean it down again.

Yesterday both mom and dad got to hold him and he did not have any Brady's the whole time we were there. Tomorrow we will learn infant massage from the occupational therapist which should be an interesting experience.

Why donating blood is important

Today Josh will undergo a blood transfusion as he has become severely anemic. We knew this might be a possibility but we had hoped Josh would be able to make his own red blood cells. The doctor called this morning and said Josh had been lethargic and having more breathing episodes. After testing his hematocrit levels (the number of red blood cells in the blood) it was determined that a transfusion was needed.

Eventually he'll be able to but for now he'll have to receive donor blood. Over the next 24 hours he'll receive his transfusion in two doses through an IV. Of course the nurse had just removed his head IV line so a new IV will need to be placed. Also while the transfusion is happening  they will stop his feeds and give him more IV fluids. His cpap level has been turned up slightly although he is still on minimum oxygen. The doctor's are also monitoring him to make sure he doesn't have any infections.

A big thank you to our anonymous blood donor and to everyone who donates blood. It is a precious commodity and we appreciate the fact that it is available for Josh and others who are in need of extra support.


UPDATE: Josh's first transfusion has been completed and he has responded really well. His breathing incidents have decreased and he is resting comfortably. His second transfusion will take place at 1 pm and will finish around  pm.

The month of July

                                                Josh with no tubes (when changing to the cpap)
So far the month of July has been good to Josh. His breathing continues to look good and even though he still has incidents of apnea and bradycardia he is able to self correct himself most of the time and in general is growing bigger and stronger every day. He currently weighs about 2 pounds 13 ounces and we are looking forward to the day when he hits the big 3 pound mark! The nurses have been working him back up to full feeds (currently 22 ml every 3 hours) and he will reach this amount tomorrow. At that point they will be able to remove the IV which will be a big step. Mom and Dad also can't wait to have the IV out because currently his IV is in his scalp. Because of the location of the IV, and the time and effort it took to place it, Mom and Dad have not been able to hold him.

Over the weekend Josh had a lot of visitors and was able to meet many of his relatives for the first time including Grandpa Jorgensen, Aunt Kari, Uncle Obie, and Aunt Brienne. Everyone had a good time meeting Josh even though he had to remain in the isolette.

                                                 Getting ready to get a new cpap mask (feeding tube in mouth, IV in head)