Savannah is two weeks old

I struggled with how to approach this blog post. Today was the hardest day for me- emotionally. I thought about whether to even mention it or how detailed to be. I got my answer when I received an email from the contact for March of Dimes. She asked if I would do a presentation for November- Prematurity Awareness Month. I turned down the presentation but it reminded me that I have opportunity to show how prematurity affects a family. So many think a preemie is just a small baby, but it's not that simple.

When Savannah was born, I knew all about the "honeymoon period". I knew her journey would not be a forward progression. However it does not matter how much you know or even if you've experienced the NICU before. It does not get easier. You still worry about your child and your heart aches watching her struggle.

I knew Savannah was not doing well ever since the horrible event she had. I needed some good news to cheer me up. When I got the news this morning that she had another rough night, it was more than I could handle. I held back tears and tried to stay calm. She got moved to a different breathing system- the Sipap. I had no clue what the Sipap was so I panicked because I didn't know what the implications of the Sipap are. After research, many questions and hearing the experiences of other preemie moms, I found some peace again.

Let's start with the good news:

• Savannah is infection free!! This is really good news.
• She is no longer on antibiotics.
• She is handling her feedings well. She is now getting 7.5 ml every 3 hours. It is now being fortified to help give her some extra calories. She is getting 22 calories vs the 20 calories. She has had no residuals.
• Her stomach is looking a lot better. It is no longer distended.
• She seems to be stable on the Sipap.

The prayer needs are :

• They did an echo on her to check for a PDA. (The echo tech was the same one who did my echo.He was very nice.) They sent the results to cardiologist. I should know in the morning if it a PDA. If it is, they will attempt to treat it with medicine before taking the surgery option.
• Her lungs appear to be cloudy on her last xray. This could indicate fluid or a collapsing lung. Another followup xray has been ordered so we'll see how it looks tomorrow.
• She is swollen from water retention. They are giving her medicine to help her get rid of the water retention. It appears to be helping. She has 3 more doses of this medicine left. A dose is given every 12 hours.
• She is on the Sipap. If she does not handle breathing with the Sipap, they will have to put her on the vent. I am praying that she doesn't have to be on the vent. I cannot hold her while she's on the vent and the vent just scares me.

here is some more info about the Sipap. The Sipap is basically bilevel cpap. It alternates between the lower pressure (which would be about what her cpap was set at) and a slightly higher pressure. One of the big advantages of sipap over cpap is that it can help correct or prevent atelectasis (which is essentially when areas of alveoli close down on themselves because the baby isn't taking deep or effective enough breaths). Also, because there are two different levels of pressure, it sometimes reminds the baby to breath a little better because there is that constant changing of pressure, so you see fewer events. She is currently being "reminded" to breathe at a rate of 20 which is 20 "breaths" of air per minute.

• She had to be moved to the Sipap because she had a rough night full of desats and fast breathing. She was really struggling.

We'll know more tomorrow. She is currently stable and her blood gas lines show that she is doing much better on the Sipap. ( Blood gas is a blood test for determing the pH, and levels of oxygen, carbon dioxide and bicarbonate in the blood. It helps them know if Savannah needs more or less oxygen or adjustments to her breathing support) She weighs 2lbs 5oz right now- this weight may be affected by her water weight gain.

Anyways my day ended much better than it started. God brought people into my day to cheer me up and remind me that He has a destiny for Savannah. He brought Amy, who brought good news about a potential discount for the breast pump. He brought all these other preemie moms who encouraged me by sharing their experiences. He brought Erin & Natalie- who explained the Sipap in detail. He brought my siblings who can always make me laugh. He brought Bonnie- who called to remind me that Savannah is on the church's prayer line and is being covered in prayer. He brought Savannah's Neighbor's mom- who is right "next door" so we can share our frustrations with each other. He brought my family who is watching Baby Kevin so I can visit Savannah. He brought Karen- whose package greeted me on the front door today after a very long and tiring day. He kept gently reminding me that everything will be ok. He used so many people to remind me that everything will be ok.

Sidenote: I'm having car issues- dead battery so pray we get it fixed quickly tomorrow.

I was reminded that I have to let myself feel the emotions. Numb is not a good place to be. It's ok to cry and be fragile at times. Even though logic says one thing- my heart may feel another way.

Here are the pictures from today:

The echo tech doing the ultrasound on Savannah

My mom holding Savannah's hand while I take some pictures.

Her sock doll close by for comfort and her grandma as well.

"Where is my sock doll? I'm not ok with being bothered." This is the Sipap on her little face.

Thank you so much Karen!!! Savannah will be ready for her fashion show once she can wear clothes. Are you all ready for those pictures? We definitely have many to choose from! I think Karen has managed to provide enough clothes for Savannah's preemie stage : )She also sent blankets, journal, toy for Kevin and two very nice necklaces with the initials KG and SG on them

Disclaimer: I realize that this will not be funny to all....but it made me and the NICU staff laugh. I asked someone to help me by assembling my pump parts while I talked to the doctor. I went to pump and found the parts like this. sooo what's wrong with this picture??