Thursday, February 18, 2016

Seraya has continued to make small improvements last week and this week!

Seraya is doing well on her cpap so far. She is current on a pressure of 12 to keep her lungs open. At one point last week they tried to wean her pressure down to 11 but Seraya didn't tolerate it very well. She immediately started desatting and so they turned her back up. She is very dependent on extra breathing help still at this time. 

Seraya received another eye exam this week Tuesday. The eye doctor explained to me that she could see that Serayas eyes were not growing properly, or I should say the blood vessels were beginning to grow crookedly already. So on Wednesday Seraya was given an injection of avastin in both eyes to stop the blood vessels from growing crooked. Today the eye doctor checked her eyes again and she said there are no complications from the injections and for that we are extremely thankful. Seraya will continue to have weekly eye exams, so they can continue to monitor the growth of her eyes.

Seraya wasn't gaining enough weight and so they added some extra fortifiers to my milk. They did not want her losing weight as they ensured us that this would not be good for the development of her lungs. In order for her lungs to continue to grow and develop, she has to continue to grow and gain weight. Lately she has been gaining about 30-40 grams every night. They switched her feeds to every 3 hours and they are pumped in to her over an hour and a half. She receives 30 mls every 3 hours. Currently she is weighing in at about 3 pounds and 9 ounces. We are very thankful that the Lord continues to enable her to grow and become stronger. What an immense blessing this is:)

I know that the last blog post I talked about the steroids she was given. They have completely weaned her off of the steroid doses, and are waiting to see how she does with this. We are hoping her lungs continue to grow stronger without the help of another round of the hydro-cortisone steroids. 

We continue to be able to enjoy lots of snuggles with Seraya which is amazing. It's a lot easier to take her out of the isolette now, without the worry of extubating her now that she's on cpap. If her prongs fall out we can just stick them back in her nose:)

 

 I know in the last blog post I had also mentioned about her bilirubin levels and platelets improving. The bilirubin levels have continued to come down which is wonderful. The ursodile medication she is on seems to be helping. Her platelets have continued to come up on their own as well. They are currently sitting at 118 which is a good number for her.

Brian and I continue to be thankful and amazed at how far Seraya has come in these last few weeks. We still have a long road ahead of us, but we are grateful for how she is doing. We truly see God's loving hand in our lives, and see how he continues to give us the strength, to travel on this road we are on. Once again we would like to thank everyone for their continued support and prayers for our family.

Psalm 57: 9-11

"I will praise you, O Lord, among the nations; I will sing of you among the peoples. For great is your love, reaching to the heavens; you faithfulness reaches to the skies. Be exalted, O God, above the heavens; let your glory be over all the earth."

Monday February 8, 2016

Since the last blog post there has been some great improvements with Seraya! The LORD continues to hear and answer our prayers! What a blessing!

Since Seraya was born, she has been intubated on a high frequency oscillator to assist her lungs and help her to breathe. She was on high pressures with this machine to help keep her underdeveloped lungs open and keep them from collapsing.

The doctors were not seeing enough of an improvement in Serayas lungs and so they decided it was time to intervene. They started her on doses of hydrocortisone steroids to speed up and help the development of her lungs. They assured us that we would see these results in 2 days and they were right. Seraya was given her first dose of steroids on Thursday when she was on a map (which is pressure) of 12 on the oscillator. On Friday morning she seemed to be doing well and so they weaned her map to 11. She continued to do well and did not require any extra oxygen which they thought might happen. So by Friday afternoon they weaned her map again to a pressure of 10:) Again she surprised us and did really well, so we could clearly see the steroids were helping. So, by Saturday morning, they wanted to switch  to cpap, which would mean extubating her! We were very excited to hear this, but also a little nervous for the procedure. Cpap is when two little prongs are inserted into her nose and she receives her pressure and oxygen that way. When she was on the oscillator she had a breathing tube going through her nose all the way down into her lungs. Right now she is doing well on the cpap and is currently on a pressure of 13 and in about 30-35% oxygen. We are relieved that she has finally moved into cpap as it is a lot less damaging to her lungs.

Also I know that in the last blog post I mentioned about the problems with her bilirubin levels. For the last two weeks they had remained the same and hadn't improved at all. So late last week they decided to start Seraya on a medication called ursodile. The doctors were not sure but thought maybe she had a blockage in her liver. The Med was supposed to help break down the blockage and help her to excrete the bile that had built up. They weren't sure if this would work. This morning I received some great news. The conjugated part of her liver has finally started to come down. Last week the number was over 200 and today it had come down considerably to 137:) We were extremely pleased to hear this! We will see over time if her liver continues to heal and begin to function properly.

Also her platelet count has been a concern for a couple weeks now, as they had continued to drop. But, today I received the good news that her platelet count had went up. Last week her count was around 50 and today it was 60 which is great, as they have never went up on their own before, without the doctor giving her a platelet transfusion. This number is still low however, as it is supposed to be around 150. Again with time we will see if this issue is beginning to resolve. Praise be to God for his goodness!

Seraya had received another echo last week and they discovered that her heart pda has re-opened and is about a moderate size right now. However it does not seem to be having any negative effects on her as of yet, and for that we are thankful!

 She received her first eye exam last week Monday but unfortunately it was unsuccessful, as they were not able to see anything. They said her eyes were too hazy at this point to see her blood vessels. She will continue to receive eye exams on a weekly basis. 

Seraya continues to tolerate her full feeds at this time. She is currently receiving 20 mls every 2 hours. She is gaining nicely and is weighing about 3 lbs 4 oz at the moment. 

Brian and I are very thankful and pleased at the progress Seraya has made within the last two weeks! Thanks be to God for his steadfast love and goodness in our lives. We continue to covet all the prayers that go up for our little family. We know we could not continue on this journey alone!!

Psalm 92: 4,5
"For you make me glad by your deeds, O LORD; I sing for joy at the works of your hands. How great are your works, O LORD, how profound your thoughts!"