Monthly Archives: June 2014

Day 10: Quiet Day

Today has been a “quiet day ” for Ms. Grey and we are so thankful for it.  Yesterday really did us in as parents and we are glad to be riding the roller coaster back up!  We will treasure these days and I’m so happy to have this blog to remember them, as we may often forget due to the bad days always being highlighted in our memories.

Report from the doctors this morning was great.  She was stable during the night and continues to improve on the oscillator machine.  Her ABG levels have continued to improve and are at a level the doctors are pleased with.  The doctors would like for her to rest tonight with out any crazy changes and see how she is doing in the morning.  We are always thankful for rest.

The blood cultures came back negative which we are so thankful for! That means they don’t see any signs of infection.  They still have her on antibiotics prophylatically.  We are still waiting on the fungal culture to see if she has the rare fungal infection but we probably won’t have that back until tomorrow.

Also mentioned in report, was the fact that her eyes are still fused.  The doctors find this a little concerning because she is a 26 weeker and most babies have opened their eyes by now. In thinking of possible reasons for this, one idea is that her thyroid levels might be a little low due to potential hypothyroidism.  This could also be leading to other issues they are seeing.  They have drawn labs and will consult the endocrinologist about this.  We will probably know more tomorrow.  We are adding to the prayer list that her eyes will open on their own and we can see how beautiful they are very soon!

So that’s a quiet day in the life of Grey.  She definitely has everyone on their toes.  All the staff here at Suburban has been fantastic.  The nurses and doctors have been beyond incredible. They show how committed they are to making her better and we cannot express enough gratitude towards them.  The doctors work around the clock trying to figure her out and state how important she is to them.  It’s really amazing to see.

Ryan and I will be heading home early this evening to “relax” and take care of ourselves since tonight is suppose to be quiet.  So many of you have been asking about us and we appreciate it!  We are resting and trying to take each day as they come.  Thanks again for the support and prayers!  We know so many have us included in your prayers and we love hearing about it!

We wanted to leave you with a picture of Grey because she is so cute and also to show you a reference to her size.  This is Ryan’s hand next to her.  She has “gained” some weight but is retaining a lot of fluids and hasn’t had consistent feeding, so they don’t think it’s “real” tissue growth.  Currently she is 590 grams and 10 3/4 inches.  “GROW GREY GROW”

Day 10: Ryan's hand next to Grey
Day 10: Ryan’s hand next to Grey

 

 

Day 9: In Christ Alone

Today was a tough day…  We went home last night in high spirits as Grey was stable and things were quite calm most of the day. But as we were getting into bed we received a call from the doctor telling us Grey had taken a downward turn. Her oxygen and blood gas levels, sugars, and GI x-rays were not looking good. They told us they were going to give more antibiotics, stop feedings, start a blood transfusion, and monitor her oxygen and CO2 levels closely. When we arrived this morning, her vent had already been switched to the oscillator and they added nitrogen gas in effort to improve her oxygenation. They had two main concerns:

First, because of her extreme sugar levels they suspect a rare fungal or bacterial infection that could have possibly been acquired in utero. They suspect a rare strand because it has not been caught by their first line prophylactic defenses. They gave her vancomycin followed by broader spectrum heavy duty antibiotics (azithromycin, meropenem, and diflucan) until they get the analysis of the blood culture back (24 – 48 hrs.). The doctor told us they haven’t seen this type of infection (if that is what’s going on) in the last five years.

The second concern the doctor had relates to the difficulty Grey is having oxygenating and ventilating. At this point, the medical team has ruled out almost all theories for what is causing the problem. When we arrived in the morning the doctor had a serious conversation with us explaining that they suspect Grey is suffering from pulmonary hypoplasia (incomplete development of the lungs resulting in reduced size and number of alveoli). This is a severe disorder in preemies that is extremely difficult to treat and can be fatal. Over the past several days the doctor would say “I’m not worried so you shouldn’t worry.” This morning they said, “I told you that I would let you know when it is time to worry…I am now worried.”

We were clearly crushed at this news and the thought of our losing our daughter or her suffering from major lung complications and possible neuro damage if her hypoxic state continued. This was our lowest low so far. We decided to go to church as we originally planned. With our emotions on overdrive nothing rang truer than the lyrics to the worship song we sang below:

In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

We know we serve a loving God who does good for His people. Nothing is more comforting than knowing you have the creator of all things, whose wisdom and righteousness transcends all understanding, in control. Thank you Tyler for a great message and for lifting Grey up in prayer during the service. We also want to thank the entire NECC community for your prayers and support.

News did get better when we went back to the hospital in the afternoon. The doctor said they took a risk in trying a different approach. They turned the ventilator pressure setting up very high (dangerous levels for such small and fragile lungs) to see if they could force the closed lung/alveoli to pop open. Praise the Lord – for the time being it seems to have worked! Grey began oxygenating better and her CO2 levels dropped from 120 (very dangerous levels) to 42 (very acceptable). While these levels continued to fluctuate on the high end the rest of the day, this was great news because it indicates that pulmonary hypoplasia is unlikely the case. The rigid lungs would not have reacted well to the high pressure if it was. Doctors are now trying to determine the appropriate ventilator levels by slowly weaning her down on the settings.

God answered our prayers! To Him be the glory! Amen!

First BM! Hooray!

Who knew we could be so excited about the smallest poo?  We literally jumped for JOY!  Actually,  she had the tiniest skid mark early in the day that we were so impressed with and then she showed off later that night with an unexpected dirty diaper!

It was daddy’s turn up for a diaper change so he took it on like a champ; however, he didn’t know what Grey had in store for him.  Grey is definitely a “touch me not” baby at the moment.  If you touch her she gets really feisty and her O2 levels start to decrease.  They try to keep touching and stimulation at a minimum which means we hardly get to touch her.  Diaper changes are set for every 4 hours so we try to be in the room for a chance to give her a little love through touch.  Ryan was feeling confident since he has changed her a few times. He started to do his thing and then literally yelled, ” she pooed!!!!,”  We all started cheering!  It was such an joyous occasion for the tiniest poo!  Well done, Grey!  I thought I might post a pic but then she might really hate me when she gets older!

So on a more serious note,  this “movement” is such a great thing because it means she is tolerating her feeds and her GI tract is working.  They have increased her feedings to 5 mls every 3 hours.  Pray she continues to tolerate the feedings because growing is so important for her.  The doctors continue to say “even more serious than her gestational age at 25 weeks, it’s her size..she is just so small.”  So we all need to chant “GROW GREY GROW!”

Grey continues to struggle with the vent!  Her gases continue to be unstable.  She seems to be oxygenating well but not ventilating.  She is hanging on to too much CO2 and her Ph is staying around 7.18 which they would be happy if it was 7.2!  They explain this is very normal for preemies and she is “acting her age.”  For the first 6 days of her life she was a rockstar and tolerating the vent like a champ. We were definitely spoiled but have high hopes she will be ventilating better soon.  From the chest xrays, the doctors have noticed that she has fluid on her lungs so they did give her a diuretic called Lasix that will hopefully pull some of the fluid off.

They are taking her umbilical artery line out tomorrow.  They still technically need it but after 7 days the risk of infections increases tremendously, so it is better for them to pull it.  Selfishly, I’m so so excited for them to take it out because this means I might be able to do Kangaroo care, which I have been dying to do.  For those of you who may not know what Kangaroo care is, it means skin to skin with baby on mothers chest.  I dream about this day because I’m dying to hold her.  There are a lot of factors that come into play but that line being in is the main obstacle preventing us from holding her.

The past 8 days have been the longest yet fastest days of our lives.  We are thrilled with Grey’s progress so far.  We can’t believe how many people have reached out to us for encouragement through their own stories.  It means so much to us to hear from friends, family and complete strangers.  Ryan and I both went to Taylor University and we are so thankful for that family who has connected with us and shared our story.   I feel like I’m continuously thanking everyone but I truly mean it and we love having so many people praying for Grey.

Love,

Allie

Baby Grey

– Rollercoaster ride

We are told this journey will be a roller coaster ride and the last two days have been our first set back.  Grey has been having trouble on the ventilator. She is oxygenating well but ventilating has been an issue, causing elevated CO2 levels. They tried to switch her to an oscillator – a type of vent that expands and flutters the lungs rather than providing single breaths. This is more commonly used on smaller preemies as their lungs are not usually developed enough to handle the tradition ventilators. It is loud and looks very aggressive, rattling Grey in her incubator. It was the first time we really saw her very upset and it was heartbreaking to watch (though they say it is easier on the lungs). However, after a night on the oscillator her labs did not improve under acceptable vent levels and she was moved back to the traditional vent. The doctors continue to make adjustments trying to get her CO2 and blood acidity levels under control.

On a positive note, she also started regular feeding with breast milk through her OG (tubing ran through her mouth to her stomach). She continues to be supplemented with nutrition through her IV as well. She has handled the feeding well and increased her volume over the last three days. Hopefully these added calories will help her grow and develop her lungs for better breathing results.

Grey’s first week!

Grey came out swinging from the start and has broken through several huge milestones.  Because she is so small and fragile, the first week is crucial to get through with limited pulmonary and intraventricular hemorrhaging. Doctors told us, due to her size, that she would most definitely have a brain bleed… it was just a matter of whether it would be a grade 1-2 or a grade 3-4 bleed. She has passed with flying colors and continues to impress the doctors. She had her day 5 head scan that showed no bleeding at all! Praise the Lord! Risks for these complications diminish greatly after the first week but she is very small and not completely out of the woods. She will have a follow up head ultrasound at the end of week 2. She was also born with a PDA (hole in main artery from the heart). She was medicated for this and the heart echo shows this has closed as well!

She has been on the “big girl” vent for several days and handling it very well. This vent is called a NAVA. It has an electrode that is placed at the end of her OG tube in her stomach. This electrode picks up signals from her diaphragm that tells the vent she wants to breathe. This is more natural than the traditional vent that forces breaths at specific intervals and shows that she has good neuro development because of her ability to signal to the electrode.

We thank God that we were in the right place at the right time and doctors were able to admit and give Allie steroids and magnesium for enhanced development prior to delivery! Praise God for His added protection!

Day 1: Welcome baby Grey Delphine Powell!

Happy Birthday Grey!  Baby Grey Delphine Powell came into the world at 25 weeks on Thursday 6/20 at 2:20am measuring 10 3/4 in. and 450 g (0.99 lbs.).  We are so excited to meet our precious baby girl!

After a long day and night, our wonderful nurse and doctors diagnosed Allie with HELLP Syndrome and performed an emergency C-section. Grey has been doing very well but has a very long tough road ahead of her. The next 3 days have very high risks for pulmonary complications. The next 5-7 days have very high risks for brain bleeds. Please pray that she makes it through these critical milestones without complications. Allie has been on bed rest with treatment for the 30 hrs. post delivery and is doing well. They discontinued her meds this morning and she will be able see her daughter in the NICU soon. She can’t wait! We have a loving and all powerful God who does not abandon. We place our faith and hope in Him. Thank you for your continued prayers and support!

Our baby girl born at 25 weeks.  This is mom's first touch in the OR.
Our baby girl born at 25 weeks. This is mom’s first touch in the OR.