Author: Mom

 

Well, the day finally came that we have all been praying so long for. We are a little late in posting the update, but Kambry came home on July 30th!

 

 

Kambry had been having an oxygen test twice a week to see how long she could keep her O2 sats up without having O2. For several weeks she had been going for 2-5 minutes. We couldn’t bring her home until she could go at least 20 minutes. We knew she was going to be staying at the FGH NICU for a while.

Reality set in and we began preparing.  We knew she would be coming home with O2 so we had to learn how to run all of the equipment and check the monitors. It isn’t hard at all…but was and is still scary sometimes.

Fast forward to today. Both girls are doing amazing and Kambry has settled in so well. She has finally decided that snuggles with mom and dad aren’t so bad. She and Brooklynn have tummy time together and then fight over who gets to nap with daddy.  Both girls sleep pretty well, and let us get a little rest at night. It is amazing to see them now, at home, and to realize that God is still in the business of performing miracles. These girls are a true testament to His power.

We still have a long way to go before her lungs are ready to work totally on their own. We see a pediatric pulmonologist in a couple of weeks, as well as a urologist to keep a watch on a small liver issue.

Thank you for every thought and prayer that you have all sent up. We would not have been able to complete this journey without them. Although our journey is really just beginning, we have come so far! Please keep us and the girls in your prayers as we continue to settle in to life at home with twins!

Brooklynn has been very busy this past week. She is now 2 lbs 5 oz.  She has had lots of cuddle time with mom and dad. She is awake and aware of her surroundings more and more. Her eyes are so wide and take in everything around her. Friday made 2 weeks that she has been on the non-invasive nasal cannula. We were prepared for her to only be on this for a short time before she got tired or her lungs needed more help, but the girl proved us wrong! She is still going strong.

We had a small scare last week when her doctor thought there may be an infection somewhere. After several tests, it was determined that she just needed a blood transfusion. They decided to stop feeds for a couple of days and let her belly rest. She started feedings again yesterday and is doing well. Even with all of that going on, she was able to stay on the nasal cannula.

 

 

Sister got her first bath last night. Her nurses sent us pictures and it was quite apparent that she was not at all happy about them caring for her in such a way. She has quite the personality already, and doesn’t mind letting you know if she is unhappy. It is such a blessing to have nurses that care for her so well and that take the time to share these moments with us.

 

We continue to pray that very soon Kambry and Brooklynn will be rejoined. Kambry is doing really well in Jackson. She is up to 12 cc’s of milk every 3 hours! This is huge for her, the most she has ever gotten.  Hopefully, this is helping to make her stronger and soon she will be on a nasal cannula like her sister. I spent a few hours wth her yesterday. She smiles at the nurses and keeps them on their toes.

 

It is so tough having them separated and even worse not being able to see Kambry every day. We covet your prayers and thank God daily for all our prayer warriors. These girls are a testimony to answered prayers!!

Hi everyone! The girls have both had a very busy week. Mostly just growing and getting stronger. Their nurses will tell you that they are both very feisty. Some say that trait comes from their mom 🙂  I say that it is a trait that is helping them to fight and press on through each day!

Kambry is doing well and getting lots of attention in Jackson. Her Daddy gives her his undivided attention most days. She is now over a foot long and 1 lb 14oz and her belly is doing great!  She is still on small feeds right now to get her belly accustomed to eating. She is anywhere from 2-4 cc’s every 3 hours.  She did have to be cut back on her feeds yesterday because she needed another blood transfusion. The good news is that she isn’t needing those nearly as often as she was initially. Recent tests show that her kidney function is looking good and her liver issues are very slowly getting better. She shows no signs of any liver damage and her direct Bilirubin levels are coming down. The main two issues we are battling now are her Vent settings and the large PDA in her heart. She got medicine to try to help close the PDA this week, but it the testing showed very little improvement. We will try one more round of meds but may have to consider surgery to close it. That is super scary to us, but we know it would be best for her.  Without the PDA closing she likely won’t be able to wean off of the vent anytime soon. We ask that you will pray specifically over these issues for our girl.  We know the power of prayer!!

Brooklynn has had a busy week growing and is 1lb 15oz. She is still doing great on the non-invasive breathing and has gotten some good belly time with Mom and Dad as Rich calls it.  She was so relaxed and happy yesterday that she pooped while I was holding her. It’s interesting the things that no longer bother you when you’re just happy to be holding your girl!!

We pray for continued growth and healing for both girls. We are always thankful for each call, text, and blog message that you all send to us. We couldn’t continue to do this without the strength of our Father and your support. Thank you for taking the time and having the desire to check on our girls!!

We have lots of news from the past week! It’s always a roller coaster ride in the NICU. Good and bad, ups and downs, but always there is light and a reason for praise.

Kambry has had the most ups and downs this week. Early in the week she had all of the leveling issues that were fixed with her specialized IV nutrition. She got to meet a surgeon on Monday who determined that she would need the 7 days of no feeds to give her belly plenty of time to rest. We weren’t happy but knew that it was what was best for her. Thursday she started having some urine output issues and the NP started Dopamine. It didn’t help as much as needed, so yesterday she got her first blood transfusion in Jackson.

The biggest excitement this week is that Mommy AND Daddy got to hold Brooklynn on Friday night! We were ecstatic!! To tell the story right, I have to give the details….When we got to the NICU Friday afternoon we had a huge surprise. Brooklynn was on non-invasive assistive breathing-that’s the only way I know how to describe it….my nursing friends may cringe 😉 She was no longer intubated and just had a nasal cannula assisting her. We have been waiting so long for this, because we knew that this was the key to us being allowed to really hold our girl.

Friday night I got the call that I knew could happen at any time, but dreaded no less. “We need to transfer Kambry.”  I got the call just after 9:30 and the helicopter was already on the way from Jackson. I had just enough time to rush to the hospital to see her before they left with her. Richard was already in Jackson; he had gone on an errand and was just about to start home.  She had been on her belly for most of the afternoon-her favorite place. Night shift got ready to turn her and found her belly very distended. She’s had so many belly issues that they were very concerned. They drew off air, 6 cc’s of milk, and 2 cc’s of blood. They immediately called Jackson for transfer. X-ray showed no abnormal air in her belly, so at this point the transfer was a precautionary measure. They wanted her near a surgeon in case things got worse. We are always worried about a perforation or a really scary issue known as NEC (necrotizing enterocolitis).

We got to see her around 2 Saturday morning, once they had her in the unit and stabilized, but we had no idea what Jackson would find and what we should expect. The NICU in Jackson is a scary place! There are around 70-100 babies at any time and no private rooms. So different from what we are used to.

Rounds take place between 9:30-10 every morning. We were told to be there so we would be included in Kambry’s care and decisions. Again, we started fighting issues; sugar dropped, sodium spiked, calcium and triglycerides through the roof. Here, though, they can taylor the IV nutrition to Kambry’s needs. No lipids, higher phosphorus ratio, exact amounts of other nutrients to level her issues. And it is amazing what a difference a day makes. As of today, 2/6, Kambry’s labs are all normal, with the exception of her triglycerides, which are under control.  The reason she’s in Jackson, her belly, looks great on X-Rays, and currently, we have no reason to be concerned. She will even be starting to try food on her belly today.

Brooklynn is doing amazing! She is 1lb 10oz and eating like a piggy!! She gets 16.5 cc’s every 3 hours. They have changed her to “continuous feeds” so her tiny belly doesn’t get overloaded. So, she gets 5.5 cc’s every hour. Other than that, she is eating, sleeping and pooping 🙂 Exactly what we want!

As always, we ask that you keep the girls and us in your prayers. Kambry will be in Jackson for several weeks before we can even consider transfer back here. Rich will be staying with Kambry and  I will be in Hattiesburg with Brooklynn. It will be difficult to say the least. We covet your prayers, texts, calls and emails. They help us keep going.

For He shall give His angels charge over you,
To keep you in all your ways.
 In their hands they shall bear you up,
Lest you dash your foot against a stone. Psalm 91:11-12

We finally have internet!! Quick update on us; I think God knew how much I could handle, we had no storm damage! We were without power for part of the day Saturday, and no internet until last night 1/24. We are so blessed because all over Petal there is mass destruction, as bad or worse than the tornado that took almost the same path 4 years ago.

On to the girls! Brooklynn is doing amazingly well!! Over the past few days her feedings have been increased to 7 cc’s every 3 hours. This is allowing her to really begin growing. Her skin looks good, her color is good and she is up to 1lb 5oz. now.  She is quite often alert and looking around. You can peek into her isolette and see her little eyes wide open and taking in the world around her. She’s a feisty little thing, too! When the nurses are working with her, she kicks her feet and waves her hands at them. I have no idea where she may get that from. 😉 She tested positive for an infection that is basically Pneumonia for her, but the Dr isn’t extremely concerned. It is being treated with antibiotics and should be cleared in the next few days.

Kambry may be just as feisty as her sister, which tells me that we will eventually have our hands full. She is still sleeping a bit more than sister, but can also be caught checking our her condo, as the isolettes are affectionately called. Kambry is still having several issues that we battle and tweak meds for daily. She has an ongoing fight with her blood pressure that she gets Dopamine for. It helps keep her BP regulated, but also keeps her kidney function up so that she has good urine output. She tested positive for a blood infection since the last update which was most likely caused by her PICC line. That was removed yesterday in hopes of clearing the infection up more quickly. Once she is clear another will be inserted. She is getting blood transfusions every 2-3 days. She is so tiny right now that she can’t make blood quickly enough to keep up with the blood draws and the infection. Even with all of this, she is still holding her weight at 1lb 1oz. She is an amazing little fighter! And….I got to truly hold her yesterday!! As the nurses were changing out her isolette, they swaddled her and I was able to hold her for about 2 minutes! It was the best feeling 🙂

I know that all of this sounds so scary, and it truly is. However, we were essentially prepped to expect most of this with a micro-premie baby, which is how the girls are classified. That doesn’t make it any easier to deal with, just that we knew it could happen. We ask that you continue to pray for both girls and especially Kambry to be able to fight off these issues and begin growing. As always, I truly believe our God has a plan for these girls and we are so blessed to be their mom and dad. We thank you for every prayer you send up for them!

The girls had another good day yesterday. Brooklynn’s day was fairly busy. Her morning Blood Gas showed that she had a higher than normal CO₂ level, so she got a new ventilator machine. The upside is that everyone feels this type is a bit easier on her little lungs since it gives a continuous flow of oxygen rather than opening and closing her lungs for each breath. She also got a transfusion of blood.  Her Blood Gas last night showed a greatly improved level of CO₂.  Kambry didn’t have much going on so she just spent the day resting, feeding and growing. All the things we want them to be doing right now 🙂

Since all of the lines have been removed from their belly buttons, both girls got some tummy time and they loved it!

 

 

 

 

 

 

Their neonatologist this week is focused on growing and getting some nutrients in Kambry that she has been missing.  Her color has improved so much over the past few days simply from her blood transfusion and being able to start getting those nutrients. She is much more pink like her sister now. His main focus is on infection control. He has been very strict on us as well as all of the staff to follow very stringent hygiene practices.

So, our specific prayer requests right now are that both girls continue to tolerate feedings well, to be able to increase size and frequency of feedings and to ward off any infections from the vent, the PICC lines, and any germs that we bring into the NICU.

Thank you again for your prayers and for following our journey!! We love you all!

 

I would like to thank everyone for every single thought and prayer! We are overwhelmed with gratitude! It is humbling to realize just how many people are praying for our precious miracles. One thought that has continually been with me is “How can someone not believe in our God?” These girls are so absolutely and perfectly formed, they are just tiny, and I truly believe that your prayers have been heard. He is taking care of our girls and He is giving each person that cares for them the knowledge needed to do just what is right for them. There just is no other way that they could be doing as well as they are!! We have a long way to go, and will continually take it day by day, but our God will sustain them!