Lilypie Kids Birthday tickers

Lilypie Kids Birthday tickers

Saturday, June 21, 2008

Much better day

Yesterday was a much better day. Brinson had less episodes and no bagging lately. She has less oxygen requirements and more reserves.

They started feeding her yesterday, but I think they are still being cautious because she still has no significant poop. I just got off the phone while doing this blog and they have now stopped the feeding today because her belly is getting bigger. So they are going to do an upper GI study on Monday.

She is still having a lot of congestion and they are not sure what is causing that. They are hoping the increase in the lasix will correct that.

The ENT saw her today and she has a floppy airway, I am NOT clear on how severe it is. This can cause in issue with breathing and eating. While being scoped today to look at her airway, they discovered that her left vocal cord is not firing which could be a long term side effect of PDA surgery. Also her cords were pretty inflamed so they think her reflux is pretty severe....which is not unusual for preemies and can contribute to the episodes that we have been seeing.

Brinson is also going to see a neurologist on Monday or Tuesday because there is a possibility that the episodes are being caused by a brain issue.

Today Mommy and Daddy took a break. I stayed around the house and fixed the rocking chair Mommy got for Mother's day (the chair I was rocked in as a baby, my father gave to my mother for her first mother's day) Thanks Sami (Noah's Father) for all the help with the chair.

Mommy is taking a break at her baby shower and I am sure she is having a ton of fun.

Enjoy the pictures and video, I know we did!

Proud Daddy!

I am just surprised how awake she is.. Barbara is trying to get her bedding straight. If you are wondering about the headband ...it was a hat and we cut the top off because Brin gets hot.
This is first time we see her track something with her eyes....pretty cool
video

Friday, June 20, 2008

Narrowing down the possibilities...

The bad news is Brinson is still having to be stimulated for not breathing. But the good news is since the pulmonalogist and cardiologist consults they believe she does not have a serious heart problem ie no cor pulmonale. YEAH....what a relief. She still has ASD and we might have to deal with that....but not now.

They are thinking pulmonary hypertension and airway issue. An Ear Nose and throat guy is coming in for a consult today or tomorrow.

Her oxygen requirements are still high because of the unknown problem. They think her gut is ok, so they are going to try some formula on Monday (we think)

So we are narrowing down the possibilities.

Daddy has the day off today...yeah! That means more time with Brinson.

Mommy had Cooper next to Brinson yesterday while she held her and she felt so much better afterwards.

Let me tell you it is scary listening to all the bad possibilities and then feel so paralyzed....not being to help our daughter.

Let's just say it has been a long week and we are glad things seem to be moving in a better direction (forward and not stalemated)

Thanks again for all the nice comments, prayers and thoughts....please keep them coming and I will continue pictures and videos of our little princess, Brinson!

Thursday, June 19, 2008

Cheeks!

Look at those cheeks, I guess the extra weight has to go somewhere. Brinson now weighs 5lbs 6.1oz. We are still waiting for the poop.

Yesterday after suctioning her and meeting with the doctor they decided on the hudson prongs would give her better flow.


They bundled her up so she would not pull off her new head rig (hudson)

She had a much better night and had no "not breathing episodes" from 1130a to 745am. They are not sure what is causing these episodes. She is de-sating regularly (from 100 down to 70's and back up), but seems to recover on her own. She still has a lot of congestion and that is definitely a factor.

Her belly is still quite bloated, but the nurse finds it better today than yesterday (maybe some gas has been relieved)

They did the EKG this morning, but it has yet to be read. We are anxious to find out how her cor pulmonale and ASD is doing? They think the nitric does not really seem to be helping, so maybe her ASD is causing all of this.

New hat


They handed out 4th of July hats early. This hat barely fits her. She wore it for a few hours and then got hot.

Tuesday, June 17, 2008

We hate the unknown!

Brinson has had a few more not breathing episodes (2 last night and 2 today) . They are not sure what is going on. They think she needs to poop and that she might have a urinary infection.

She had an eye exam today and the right eye is fine but the left could need some attention. They will check again in a week.

Her echo and ekg have been postoned till the 19th.

Ring shot progression

3 Days old - March 7th
4 weeks old - April 4th
6 weeks old - April 19th
14 weeks old - June 16th

Father's Day




Here are some photos from Father's Day. I was lucky enough to hold Brinson before she started having issues.

Monday, June 16, 2008

Got cold, stopped feeds

Last night, Brinson again got cold and had some greenish residuals on her feeds. Cold temp and green residual (slow gut) can mean infection. So, they made a decision to do a full workup on her.

She is also back under a warmer, sitting at 40% O2 and getting 2 different antibiotics.

One possibility is, since she is not acting sick, it could be Brinson not tolerating the breast milk feeds and they may have to change to formula.

The good news is whatever it is, we caught it early.

Sunday, June 15, 2008

Squeeky hiccups!

video

Meme and Grammy



Bundle O'Brinson

Without snuggly
With snuggly
A gift from Noah's parents, it is dog holding a pacifier.


Because she is holding her own temperature (no warmer) she does need some clothing and blankets to help. So they bundle her up and un-bundle when she gets to hot (99F)

Starting yesterday there is no snuggly being used, because she is a big girl. Brinson at term (June 26th, 40weeks) will be very close to Lisa's weight when she was born.

Our neighbor across the way

Here is Sami spending time with Noah and his Mother-in-law
Across the pod

Sami (Noah's father, Laura's husband) keeps things light in the NICU, I don't know how he does it; probably a lot of crying in the shower. But somehow he is able to laugh and joke every time we see him.

When things get tense, we both dump on each other about our current frustrations and end up feeling much better afterwards.

You can read more about Noah here (you do have to register though)

Daddy with Brinson

Her outfit says it all!

Daddy reading a story about a princes to our princess
Yesterday I got to spend some time with Brinson. I read her a story and I just sat with her and held her pacifier while she just looked around.

She loved every minute of it.


video

video

Today Brinson should be pretty amped up because I get to hold her and she is getting a blood transfusion. She is making some of her own, but not quite enough yet.