Happy 1 Month Birthday Baker

I'm a little early but by the time you all read this he will be 1 month old. He now weighs 2lbs 5oz or 1050 grams. We had another good visit tonight. I got to feed him a whole syringe of milk (5mls), and mom changed his diaper. He's still tolerating his feeds. His doctor update was good today. She said that if he continues the way he's going, then they may take the breathing tube out next week! This is so exciting because we will finally really get to see his face. His doctor also showed us his growth chart and he's moved into the 50th percentile for his gestational age. I'm not too sure what that means, but she said that that was good too. Go Baker! Thank you everyone for your prayers, support and happy thoughts.

910 Grams – 2 lbs Baby!!!

We had a really good visit this evening. He is digging his feeds. So far he's had two 2.5 ml feeds of good mommy's milk and has digested every drop. He is back down to lower oxygen, and they have been gradually lowering his ventilator settings. He's getting less and less dependant on the ventilator. (This can change and does all the time, but it still looks like he's making progress).

Changes

Overall Baker is still fighting along. We got the results from the cranial ultrasound and the IVH, has not changed. We are learning that we have to adjust our expectations for Tuesdays (the day we get the results of the Monday Cranial Ultrasound), again we thought we would see signs of it resolving and again we were disappointed. There is a lot on the internet and the books we have about Intraventricular Hemorrhages, and they aren't good; especially when you get in to the Grade III and Grade IV variety. The bright side is we both found a wealth of stories from Mom's of babies that had Grade III and Grade IV and are absolutely fine. These stories are what we hold on to when despair starts to creep in.

They started him on a diuretic because he's started to retain fluids and swell a little bit. They are going to start his feeding back up today as well, his bowel sounds are normal again. He's opening his eyes more now, but every time I tried to get a picture he closed them again.

Baker’s Current Home

The little guy is scheduled for another spinal tap tomorrow, to rule out any infection. We will also get the results back tomorrow of today's cranial ultrasound. He had another good day today. Since I don't have much of an update I figured I could talk more about his current home.

On the left of the picture you will find all the machines that regulate the flow of his medications, IV nutrition or TPN, and Lipids. In the middle is his isolette. The isolette regulates his body temperature, since he can't on his own yet and kind of protects him from the outside environment. On the right is his Ventilator. His monitors are above the vent (not in picture).

He also moved up to the next size blood pressure cuff!!! Here is a picture of his first one. We got to take it home for his baby book. It seriously barely fits around my ring finger.

It really is neat how all the medical equipment is miniaturized.

Double Chins and Cuteness

The little man now weighs 1 lb 12 oz and seems to put on more baby fat every day. He now has a cute little double chin. We only stayed till 2 AM this morning, when we got back he was in good shape and stayed stable for an hour. We are going to start the Kangaroo Care back up tomorrow evening.

The Doctor updates are getting more and more hopeful. For the first time she is using terms like you don't need to worry about this and she isn't crossing her fingers every time she delivers an update.

Late NICU Night

Baker had an O.k. day today, but had some issues. When Baker's mom was on her day visit the day nurse asked her if she wanted to hold Baker today, that he could tolerate it and probably again this evening. Teresa was very excited about this so she said yes. Now I explained in the earlier post the mountains that have to be moved in order to move Baker from his isolette to Mom or Dad's chest, and that they always have a respiratory therapist on hand to assist with the move. Well the day nurse thought she could handle it all by herself. Before she moved Baker she didn't get any of his tubes or probes straight and tried moving him to Mom's chest. It also seemed that she was nervous moving him. He did not like it at all, his O2 sat level went way down and he wasn't recovering. Teresa asked if she needed an RT – and the nurse said no it's o.k. After a few more minutes of him not recovering the nurse said – I guess he doesn't want to be messed with. Teresa asked again for a respiratory therapist and finally one came. He still wasn't recovering so Teresa asked that they put Baker back in his isolette, and so they did. He finally recovered. This was the first time this happened. The last 3 times we did the Kangaroo care, he seemed to improve – and coincidentally the last 3 times we had a competent nurse and respiratory therapist.

His day was fine after that. We came back for our evening visit and Baker seemed O.k. but then we notice 3 nurses tending to 8 babies in our cluster. We were just told yesterday that they staff the clusters with 1 nurse per 2 babies and usually they have one critical baby (Baker) and one not so critical baby. Tonight it was different our nurse had 2 critical babies including Baker and 1 not so critical. The other critical baby was getting a whole lot more attention then Baker because the parents were upset about their baby's condition. So we are going to help the nurse out and hang out till the next shift at 6 AM. We just came home so Teresa can pump, and then we are heading back to the hospital.

I understand that we can't have tenured 10 year veteran nurses every shift, but it's become a pattern that when he has nurses that are a little green he doesn't do well – and when he gets a veteran nurse he does excellently.

I guess this is all part of the roller coaster that we are on, we just pray daily that these days are far and few between.

Happy 3 Week Birthday Baker

Well he hit another milestone last night, and of course it's the one night I forget the camera. He opened both of his eyes yesterday!!! I'm not sure if I detailed this in any of my previous posts, but when Baker was born both of his eyes were fused shut. This is common for preemies his age. He apparently opened his eyes yesterday afternoon, but then didn't open them again until they put him on Teresa to hold. So now we can really know when he's awake and asleep. We are still too early to know the condition of his eyes; it's common for neonates to have vision problems. Another thing we have to think about is ROP or retinopathy of prematurity. This is another scary disorder we have to worry about until he get's his eyes checked out by an ophthalmologist (Sometime in his 4^th week).

He had another good day yesterday and loved his Mommy time.

I also want to send thanks to Barb Cooper from So The Thing Is…BLOG. She wrote a sweet post about Baker and was generous enough to knit him a hat. You can read the post by clicking HERE . Once Baker get's his hat we will take plenty of pictures and post them here

Thank you everyone for your Prayers and Support!!!

Another Good Day…

Baker had another good day. He was stable for most of the day. We had no surprises from the Doctor and I'm going to sleep well this evening.

Baker and Dad

Baker had a really good day today. His bowel signs are good again and he's back on minimum oxygen. Baker stayed mostly stable all day. He looks really good and is gaining about an ounce a day in weight.

It's been 18 days since my boy was born and I finally got to hold him. It's so bizarre what has to happen for us to hold our baby.. First we have to notify the first shift nurse that we want to Kangaroo today. They notify the second shift nurse that has to make sure he had a good day. They have to suction out his airways, change his diaper and get all the IV and ventilation lines ready to move. A respiratory therapist comes in to assist with making sure Baker is getting enough oxygen during the move from his bed to our chest. Once Baker is in position then the respiratory therapist tapes his breathing tubes to our shirt. Then they monitor him to make sure he likes where he's at. Then that's it, we get to hold him for an hour for a maximum of 1 hour a day. He liked daddy time this evening. He tolerated it excellently, and then it was over way to fast. It was so amazing...

Down then up.

This day was such a roller coaster… Baker got a cranial ultrasound yesterday and we have been waiting for the results with the hope that the initial Grade 3 IVH (Brain Bleed) would show signs of recession. Well we finally got an update from his regular doctor later this afternoon and he still showing signs of a Grade 3 in his Right Ventricle (Top Right of his brain), and a Grade 4 in his Left Ventricle. After we got that news the doctor had to go because she had a baby that she had to intake. This we thought was the worse news we've gotten on Baker to date. Of course we went looking up information on Grade 4 bleeds and none of it was good, this increases the risk for Baker to have long term developmental problems.

We went back to the NICU to visit with Baker this evening and ran into his doctor, she asked if we had any questions on the update and Teresa said yes we do. She asked all about the bleed and again his doctor was concerned but not very concerned. She said she talked to Neurosurgery and they said there is no reason for them to intervene – though it's a grade 4 bleed, he is having no swelling in fact the ventricles actually have gotten smaller since his first ultrasound which means they are doing what they are supposed to (I guess…)…

Teresa's last question to the doctor was if and when we can start holding Baker. For preemies they start off with a skin on skin or Kangaroo Care. The doctor said sure lets start tonight, just let me check with his primary nurse. His primary said it was o.k. So Teresa got to hold Baker for an hour this evening. He tolerated it excellently. Baker's mom for the first time in a long time looked absolutely content. If Baker is a good boy tomorrow then Dad get's to hold him next. Once again we are reminded that our boy is going to fight through this.

Welcome to the Baker Updater

Thank you for stopping by Baker's space on the web. Baker Terry Tynefield was welcomed to the world on Saturday Morning, June 2^nd, 2007. He was only 23 weeks and a few days old when he was born; weighed 1 pound 5 ounces; and measured 11 inches long. He is currently spending his time in the care of the local NICU, has a good doctor and has been a little fighter the whole time.

This blog was originally created as a source of update information for all family and friends.

If you want to e-mail any messages or support feel free to e-mail them to bakerupdate@tampatechies.com .

You can also post comments on this blog; I've opened it up for anyone to leave a thought or comment.

If you want to leave a voice message for Baker or his parents please call 813-579-3609.

This blog started off as an e-mail list, so if you want to catch up on Baker's progress, click on the links to the right to see the original e-mails.

 

Again, thank you for checking in and we are most grateful for all the prayers, good thoughts and support.

Scott, Teresa, and Baker Tynefield