Weekend Review

Let's see if I can patch together what has happened since the last post.

On Saturday morning Blakelee had 4 IVs. They were giving her nutrition, 2 antibiotics, and then the medicine to close the PDA. She got a blood transfusion on Saturday morning as well and that seemed to help things a lot.

 

The medicine that they give her to help close the PDA is kind of like ibuprophen and constricts the tissue. Well it worked on her kidneys and pretty much shut them down. In the picture above she is quite swollen from all the fluid build up. She's a little chubber. They started giving her lasix to help with the fluid and Mandi said last night that she wasn't quite so chubby. Before Saturday was out though she had an IV in each hand, one in the foot, one in the leg, one in her forehead and one behind her ear. 

They did a 3rd spinal tap on Saturday and it came back clear so they were able to stop the antibiotics and start feeding her a little.

Sunday morning they were able to put in a PIC line IV and were able to remove all the other IVs except the one behind her ear. I guess Saturday night the left lung was having trouble staying inflated but was much improved Sunday morning. As of Sunday afternoon she just had the pic line in her forearm and the arterial line in her leg. They are feeding her 3 mil every 3 hours. 

They will let Blakelee rest for the week and probably check the end of the week to see if the PDA had closed. They are upping her feedings today and starting to wean her off the vent. Long week for the babe, I hope this next week is calmer for her.

Back on the Vent

They put Blakelee on the ventilator this morning. She had another grade 4 A&B early this morning. Rather than continue to ride the roller coaster they put her on the vent. This way she can rest and not fight to keep her stats up. They were going to do another spinal tap this morning because the one they got the other day had too much blood in it. They are going to hold off on that now and just let her rest.

I'm not sure why they let me update this blog because I seem to forget so many things. Yesterday they started medicine to treat her open PDA.

"The Patent Ductus Arteriosus (PDA) is a blood vessel that connects the main vessel leading to the lungs to the main vessel of the body. When babies are in the womb, this blood vessel is open because babies aren't using their lungs to breathe so it allows most of the blood to bypass the lungs and go to the rest of the body. Once babies are born, the blood vessel will gradually narrow and then close after a few hours or days. In preemies, especially those who have had respiratory distress syndrome, the blood vessel may stay open."

  

When they did the heart echo on Tuesday they found that the PDA was still very open. Yesterday they started giving her the medication to hopefully close it. Today they started a second IV of the medicine, so now she has one in her hand and one in her leg. They will do another heart echo tomorrow and see if any progress has been made to close the PDA. Although they don't think that the open PDA is causing the severe A&Bs it is something that needs to be taken care of. If the medicine doesn't work in closing the PDA they will talk about surgery. We should know more after the echo tomorrow.

Please keep our little one and her family in your prayers. This part isn't being very fun.

*PS - They still won't feed her until this is all figured out. Super Sad, she loves her food and she hasn't eaten since Monday.

4 Steps Back

On Monday Blakelee weighed 2lbs 3oz. Today she weighs 1lb 15oz.

I forgot to mention in the last post but on Tuesday when she had her episode they stopped feeds. I asked the nurse if they worried about Blakelee losing weight and she assured me that they didn't because they were still giving her nutrition through the IV. Well, I'm just gonna say it, SHE IS A LIAR. I mean that in the kindest way possible.

Now people, I can gain 2lbs on any given day so I just don't see the problem. All she needs is 2 pieces of toast with peanut butter and jelly and a glass of chocolate milk every morning. For lunch we could get her a bacon cheeseburger from Apollo Burger. Then a chicken chimichanga from Joe Bandidos for dinner. It works great for me.

So can we get some extra prayers for this little one to gain some weight. Kind of sad and discouraged this morning hearing about dropping below the 2lb mark. She is doing great with the breathing. Nothing really conclusive on the tests yet and we hope they will start feeding her again this afternoon.

Super Naughty

Blakelee had her first super naughty day yesterday. SCARY.

Grandma Ho never calls me at work unless there is something wrong. So when she called me yesterday morning I knew we had some trouble. Blakelee had two level 4 A&B's yesterday morning. Level 4 means that she wouldn't start breathing on her own or with stimulation so they had to use a bag to resuscitate her.

The doctors and nurses are just so great. Blakelee was immediately put on 2 antibiotics. And then they went to work trying to figure out why it happened. She had all sorts of tests during the day, x-rays, heart echo, spinal tap, blood tests, and urine samples. Most of the tests take 24 hrs to get results back so hopefully we will know today. Blakelee is back on the c-pap but just very low oxygen. The c-pap just puts a little force in the air to remind her to breath. She is totally stable right now. Even this morning they said that she had one small A&B during the night but other than that did really well.

I will update again when I know more.

My most exciting visit with Great Auntie Tara :)

Little Miss Blakelee is doing so well right now. As of today they have moved her to room 3! This also means that Mandi and Russell are able to hold their baby girl twice a day (once every shift) for up to 30 minutes as long as her vitals stay good during the holding. She also weighs 2 lbs. 3 oz. So now she has made it past her birth weight and 2 lbs 2 oz. Good job Blakelee and we hope you continue to gain weight quickly :) They have upped her feedings to 18 ml every three hours so that is great.

Mallary and I were able to go up and visit on Friday. I got to put my hand on her back but she really didn't act like she liked it so I stopped. It is so unbelievable to touch a baby that small. Any baby brings a tear to my eye, but it is just remarkable to be able to be close to such a sweet baby straight from heaven. When I went back the second time Mandi was able to hold her skin to skin again. She is so content when Mandi is holding her. She is pretty wiggly when she is in her bassinet. The nurse told Mandi that she should do skin to skin all the time because the baby's vitals do so well when she does. Oh but Miss Blakelee was being a little naughty when I was in there. . . Her food had just gone through her feeding tube and she started to have an A&B. I was not thinking that these were as scary as they soon proved to be. Basically what happens is the baby gets tired and forgets to keep breathing. The nurse came over when Mandi said that she was having one and tried to adjust the baby's position to fix the problem. When I looked at her tiny little face it was turning red and then to a darker purple color. I was FREAKING OUT!

The nurse then took the baby from Mandi to stimulate her breathing. She would adjust her oxygen and take big deep breaths and baby girl just didn't want to do it. Finally after being unwrapped and having her back patted and her chest rubbed she came out of it. I was so happy to see her numbers go back up to what is normal for her. It had to have been 2 minutes and I was shaking and about to cry the whole time. So so scary and Little Miss Blakelee should never do that to me again! Mandi was completely calm but I could tell the nurse was a little flustered over how long it was taking her.

This is a quote I found, "A baby is an angel whose wings decrease when her legs increase."
I truly think that Blakelee is such a special baby. Such an angel, and although I know she is here now I think she spends quite a bit of time still wrapped in our Heavenly Father's arms while she continues to get strong and grow. We are so thankful for the blessings that Blakelee and her mommy and daddy have received so far. We continue to pray that all will be well and that all she does exciting from now on is getting bigger :)

* Also on a side note, Mandi had a horrible toothache and had to have some dental work done while she is out there. It's so great that they could take care of it right there in the hospital.

Love, Your Great Auntie Tara

Update Tuesday 3/1

Blakelee is doing so well. She weighs 2 lbs even right now. That is down an ounce from yesterday. She is still doing the A&Bs.

I got to go spend the afternoon with Mandi & Blakelee yesterday. I haven't been there since she was born. You can look at the pictures but they just don't do justice to how small she really is in real life. It was shocking to see her again. The video below shows Mandi touching her so you can kind of get an idea of how tiny she is.

She just wasn't very comfortable and was moving around a lot. Miss Blakelee was being kind of naughty while I was there. First she pulled the temperature probe off, then a little while later she pulled the feeding tube out. Naughty naughty. I'm sure she used up too much energy doing all of that. The little stinker can now lift her head up and turn it over.

Feedings are 17 mil right now and she is doing so great on them, she is able to digest all of it. The nurse said on a 17 mil feeding she can maintain the weight she is right now. As they gradually add more to the feedings she will be able to gain.

Now for the best part of my visit. I was able to touch little Blakelee. OH MY GOOD GRACIOUS. She was laying on her back with her little hands on her chest. I put my hand over hers and just held her there for a minute. It literally took my breath away, I was scared and excited. She is just such a little miracle and to hold that in your hand is just incredible. I can't wait until Mandi & Russ get to hold her and kiss her. It doesn't sound like they will have to wait much longer. It's so hard to be there with her and not pick her up and snuggle. 

We probably won't update everyday now. Thankfully there isn't a lot to update about.