Thankful for so much...

The past four weeks, as you all know, has been a time of trials, praise, uncertainty, more trials, more praise, and still some uncertainty as Malia continues to grow, become stronger, healthier and more precious by the minute. We want to take a moment to say "THANK YOU" to everyone out there, around the world, who has been praying for this tiny little life who we have all come to love named Malia Joy. THANK YOU so much for all the encouraging emails, testimonies of similar situations, phone calls, cards, text messages, visits, childcare and meals. We are truly grateful and praise God for all your prayers, support, and love during this past month. The generosity and love you've all extended, and continue to, has brought us to tears on more than a few occasions. We have also loved hearing stories about how little Malia's heart (problem) has changed hearts all over the world as people rally together to pray for her and as God continues to heal her. We serve such an amazing God!
We were reminded this past Sunday from the sermon that we can trust God everytime to give us mercy and grace in our time of need. Whether we consider ourselves as christian or not christian, God extends his mercy and grace on everyone. We have felt God's mercy in so many different ways through all this, from emails coming at just the right time with encouragement or sensing a great peace that is unexplainable to just knowing that our Savior (Jesus) understands. He has truely given us the strength and energy to endure this past month and continues to give us his grace daily as we juggle spending time as a family at home, trips to the hospital, daily activities and Harley going back to work. Each day we continue to ask God for what we need and trust Him for his presense and grace through this difficult time and believe that he will give us exactly what we need to endure.

Continuous improvements

The past few days have been more up and down emotionally than I would expect given Malia's physical condition/appearance.

Recent brain ultrasounds have shown official reports from radiology that the cysts still exist but are unchanged.  Though we received what could be perceived as doom and gloom news from the initial scan was not the case with this latest.  Even though radiology reported as they did, the neonatal doctors on this week are in agreement that they don't believe them to be cysts at all.  It's complicated for me to dictate in words on a blog, but the brain pictures they are looking at are not as simple as a single image.  They look at dozens of images which are single perspective slices of each part of the brain.  What the doctor(s) explained to me, and makes sense logically as I looked at the images myself, is that what they see being reported as cysts are more likely just a continuation of the horns of each ventricle.  See, told you it's hard to explain... I've said it before, the complexity of the human body far supersedes the knowledge we as humans have of it.  We continue to trust God with her life, and are eternally grateful for all of the prayers each of you continue to lift up for Malia and our family.

Regarding her heart, the recent EKG was analyzed and assessed by the cardiologists.  The report I received, from one of the nurses, Monday night was that they made a diagnosis.  Based on the EKG they believe Malia has what is called Wolff-Parkinson-White syndrome (WPW).  We are still waiting to meet with the cardiology team to discuss this assessment further, but also received mixed comments from other medical staff as to how definite this diagnosis is.  Though treatable with medication, and possibly later in life with invasive risky surgery, I (as a father) of course want to see this diagnosis just go away.  So yea, I'm praying for that.
Also, regarding her heart, they have stopped giving her Digoxin and are now giving her propranolol.  Apparently this is a much gentler drug and we have seen her typical heart rate change for the better since that change was made.  Malia is still receiving Lovenox, a preventer of clotting, in response to the blood clot seen in her heart.  They were scheduled to echo her heart today to check the status.  Depending on the results, we are still waiting for, she may be taken off of that medication.

On a lighter note - this little girl, with all of these apparent problems on the inside, now appears as normal as any other healthy "33 weeker".  The stability of her vital signs, physical development, food intake, all are indicative of a stable preemie of her age.  All of the various medical staff continue to visit her and comment on how amazed they are to see this little princess looking and doing so well.  It was nearly 3 weeks ago when all of them (myself included) were in similar disbelief of the quasimodo looking littler girl.  Yes, I can't lie, though the person of Malia equaled nothing but beauty to me she was not looking good back then.  Of course I love her no matter what, but the truth is Malia is now flaunting her full fledged NICU beauty queen status.  In light of her progress with breast milk intake, they are in the process of a triall period with her off of supplemental IV foods.  Anyone remember a while back when we asked for prayer because they were talking about not being able to use breast milk?  Thanks to our friends for praying and thank God for providing, simply amazing.  Also, over the past 4 days they have been graduating Malia to simpler beds almost daily.  Late last night she was moved into an open air "crib" which means she is controlling her body temperature on her own and is resilient to external noise/light.  Lastly, she is now off of all pain medication and seems to be suffering little to none withdrawal of the narcotic she was on (fentanyl).

Happy 2 week birthday to Malia

I loved letting Alison hold Malia yesterday, but they still are only wanting one "handling" per day so I watched the girls while momma enjoyed.  Today it was MY turn to hold my baby girl!

I think we have maybe seen her accidentally twitch into a smile once or twice before.  Today we got about 5-10 minutes of off and on smiles.  Sure it might have been delirium from getting off her narcotics (fentanyl) or maybe a long string of gas... but to me it seemed that she was smiling when I talked to her.  Wow!  Wow, wow, wow!  I was eating up every bit of it.

There are smaller babies on the NICU but Malia is definitely the smallest baby I have ever held.  Having dropped about 3 lbs since birth (which was a good thing) she had a very small gain today bringing her up to about 3lbs 11oz (which is also a good thing - meaning she is starting to process the milk they are pouring into her stomach).  Malia's birth weight was about 6lbs 8oz, so yea we have seen a lot of change in the past 2 weeks.  Malia still doesn't have great eye control though it does seem she tracks to my voice occasionally like it appears in the photo to the left.

Tomorrow they will be doing another ultrasound on her head/brain to recheck the cysts that were observed previously.  Also an EKG will take place to check on her heart.  We don't know any details, but we have heard reference to the cardiologist possibly seeing something that might elude to the cause of the initial problem(s) with her heart.

Holding Malia

What a wonderful feeling it was today as I got to hold Malia for the first time! I waited almost 2 weeks for this moment and it felt so good! The girls also came with us to the hospital and they finally got to meet their little sister. Kayla was able to listen to Malia's heart beat while Lydi gently held her hand. It was a precious moment seeing our whole family together for the first time since Malia's birth. She continues to get better and tubes are disappearing left and right. They took her off the ventilator on Friday, transitioning her to CPAP , then today (AM) she was only needing small amounts of oxygen from a nasal cannula . Malia is also beginning to tolerate increased amounts of breast milk receiving 8ml every 3 hours. Isn't God good! My baby girl is absolutely beautiful, precious, and just down right perfect!

Bye bye chest tubes - hello brain cyst(s)

Today we had a really great time with Malia. Not only did she have her last (of 3) chest tube removed last night but we also got to gaze into her eyes for nearly 10 minutes straight. For a while she was straining to get even one eye open, then after returning from a quick break we got the longest streak yet. It was sooo cool to look at her and to see her looking around. I know she's not exactly seeing everything, but it is just another one of those things that gives us the sense that she is making progress. Alison also had the chance to change her diaper for the first time and lo and behold it was full of what I call "oil spill" (newborn poopy). This is a good thing, as it could be a good indicator that she is taking some of the 1ml of milk that is being given to her every 6 hours now. They also changed her from the crazy life saving (this thing looks like something from Lost in Space) ventilator and gracefully accepted the new less invasive ventilator. There is a chance she could come off the ventilator all together in the next day or so based on how she does with her vitals and oxygen for the next 24hrs.


Now, a couple of other goings on that are triggering emotions and prayer for us.

     Tonight they will be putting in a "central line" to allow them to remove the umbilical tubes and not have to keep giving her IVs.
     The doctor on duty mentioned that there is a possibility that due to the baby's premature state and issues she has gone through that she will not be able to take breast milk. We were definitely planning on her breast feeding, and further have been pumping milk factory amounts of milk since birth. I know, you're thinking I don't get any credit for that... but believe me when I say it is a stretch for me to stand in front of the sink multiple times per day cleaning the parts required to keep this operation up and running.

     We also received word that an ultrasound done on her head/brain revealed about 3 or 4 small cysts. As we were explained, these are most likely caused by periods where she lacked oxygen (either in utero or after birth). This news really caught us off guard as everything has been going so well and we were having such a good visit. They will rescan in a few days to find out if they increase in size, remain the same, or disappear. We are praying for the latter, of course. In the explanation, we were told that cysts in this location are similar to what is seen in babies who have, or eventually develop, cerebral palsy (CP). Not sure if it's just my denial or what, but I let it just go in one ear and out the other not letting it bothering me. Not quite so for Alison, and she is really struggling with that right now. Faith is definitely being challenged right now, but I think a good nights rest and prayers from our friends will restore strength.

Best news yet!

Today started off with a phone call to the hospital to see how Malia fared through the night and if she tolerated her chest tubes being clamped off. We got word that 2 of them tolerated the clamps but one of them created more air to fill up around her lung (pneumothorax). Harley was a bit discouraged but I was thinking 2 out 3 isn't bad. When we arrived at the hospital later that afternoon she looked even better than she had the day before. Her swelling continues to go down and it finally looks like she is at her normal birth weight. We got word that they were able take out 2 of her chest tubes that day and now only 1 is remaining. Before leaving we were able to talk to the Dr. a bit about the remaining chest tube and other machines that she is currently on. He was very confident that the pneomothorax would heal in 48 hrs and they would be able to take the last remaining chest tube out as well as taking her off the ventilator Tues/Wed. She has been taken off both blood pressure medicines, dobutamin and dopamine, and her blood pressure has remained stable. We asked the Dr. how common chest tubes in babies were thinking this stuff happens all the time and he said he hasn't seen one in over a year. The nurse on duty said she's worked at Memorial for 3 yrs and has never seen a baby with a chest tube. Malia so far has had at least 5 or six put in over a week period b/c of wrong or shifting of placement. Hydrops is also not a common diagnosis they see and the Dr's only seen 2 other cases in his 3 yrs at Memorial. All this to say, we are extremenly thankful that Malia has survived the week and is doing so well! The Dr. told us the words today that we weren't expecting to hear for weeks. He said "she's a survivor, she's going to make" "we'll be taking her home in 5/6 weeks and she's going to be ok". I know we both couldn't believe the words coming from his mouth as he spoke them so causually but I have to tell you, they felt so good! No one has told us yet that our baby was going to survive and we were both elated. She still has a long road ahead of her in the NICU so we continue to pray for strength, healing and growth in her little body but PRAISE GOD! He has a special plan for this little fighter.

Home at last, but bitter sweet...

I woke up spending the first night in my own bed after 16 days in the hospital. I was completely dependent on Ambien while in the hospital and was so afraid I'd need it at home. I guess the comfort of my own bed and having the closeness of Harley was the only thing I needed. I've slept great ever since (praise God). We started off the day getting ready with the excitement of going to see Malia. We had a great visit with her in the early afternoon and made plans to go back to the hospital that evening with Grandma and Grandpa so Grandpa could meet her for the first time. The lastest update on Malia today was that she weighed 5lbs. 1oz, almost 1 1/2 lbs. down from her birth weight. Estimated (dry) birth weight was 4lbs. 1oz, so she has an extra pound of fluid left to go. It's amazing how differntly she looks now from when she was born, meaning she's a lot less swollen and can see her mouth, nose, eyes, and ears all in porportion with one another. Harley asked the Dr. on a scale from 1-10, 1 being the most crital at birth, where is she now? and the dr. said 5/6. So she's not out of the woods by any means but getting better and stronger each day. It was encouraging to hear but we've been warned that the life of the NICU is like a rollercoaster, she'll have good days and she'll have bad days.

Alison's discharge day!

I was so ready to come after being in the hospital for 16 days. I was excixed to be with my sweet girls again but it was definitely hard to leave Malia behind. It's comforting to know that she is getting the best of care and God has been so good at supplying us with a peace that is unexplainable. This was the passage from the bible I read earlier this morning: "Peace I leave with you; my peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid" John 14:27

Birth-day

I (Alison) was feeling great, finally getting use to cardiac meds but I wasn't feeling baby girl move inside me at all that day and it was making me a little concerned. I spoke with the Dr. and she said we'd just monitor the baby an extra time in the late afternoon. We started monitoring baby at 4:00, by 4:15 I had 3 nurses in my room yelling out the door "page Dr. Martin". Baby's heart rhthm decreased for more than 3 minutes and caused concern for baby not doing well. The Dr. started doing an ultra sound and was preparing me for an emergency c-section if need be. She said if we don't see the baby move in the next 30 minutes, she needs to come out if we are going to give her a fighting chance (chance of survival was not very high). I quickly called Harley at home and told him "get to the hospital quick, something is wrong!" I cannot explain the emotions at the time but I know that I've never felt the power of God so strong in my life as I did then in those moments. I had complete reassurance that whatever was going to happen to baby Malia, was God's plan. I looked at Harley in the operating room after him asking me if I was ok and I said "All our days are numbered here on this earth. If we have 31 weeks with Malia or 30yrs or 90, God is in control." Once Harley arrived at the hospial he had about 2 minutes to process everything (he usually takes a little longer being the logical one) and I could tell he was overwhelmed but before I knew it, I was being whisked away to the operating room and within 30 minutes baby Malia was born. It might have been the longest 1/2 hour of my life as they were stiching me up and not knowing the prognosis of Malia. All I knew was that she was very sick and she had a long road ahead of her if she was going to survive. I just layed there and prayed for her little body to respond and for the dr's to know what to do. So many events had happened up onto this point that we believe weren't just coincidence but truely God's divine timing so I clung to the hope that God has something BIG! in store for this little one.

Coincidence, I think not..

I went home last night to try and get a good night's sleep and get a little work done. One of the IT staff I work with from India (Danny) called me on the phone at 11:44pm, after seeing that I had been emailing, to see how I was doing. Danny said that he could hear it in my voice that I was worn down and assured me that he and staff from our Compassion office there were praying for us. I went to sleep very soon after that praying for Alison and for baby - and feeling some comfort with the reminder that many friends around the world were doing the same.

I awoke the next morning to some incredible news - the baby's heart rate has registered on the monitor with a normal heart rate for 7 hours straight and still counting. Again, this was coming from the monitor that had proved not so reliable in the past week. So we patiently, but excitedly, waited for the ultrasound around lunch time. They came in around 12:30pm and within a couple minutes the cardiologist said "she's officially converted", sweet!! We praised God with this awesome news at the same time praying that she would remain with the normal heart rate. They did reiterate that we weren't done yet and that the fluid on her chest and abdomen were still a concern. The hope was that with a normal heart rhythm that the baby's body would start to process the fluid on her own and it would decrease.

Later in the day we asked the nurse to see if they had the paper showing the actual heart rate change so that we could keep a copy for ourselves.

After cherishing this piece of paper for a while it dawned on me that the time of the heart rate conversion was 11:48. Just moments after being assured by my friend from India that he was praying. Many might pass this off as coincidence, but I truly believed this to be a direct answer to prayer. Specific... urgent...prayers. We have a mighty God who does hear our prayers. I will now be filtering all of my needs on to my friends from India so they can pray for them. : )

Improvement finally!

This was the best day yet. The midday ultrasound showed no atrial flutter and a heart rate of 195 bpm. Shortly after the ultrasound about 7 hours of straight 16-180bpm heart rate were observed. Then in the evening she went back to 235+ heart rate from doppler monitor, so not sure if it was back in flutter or just accelerated. Alison's parents arrived and instantly removed tons of stress from both me and Alison. Went to bed in hopes and prayers that improvement returned.

More crazy heart medicine

The roller coaster of monitoring continues, we receive false hope from the generic doppler heart monitor and then the ultrasounds show the flutter. After increasing the frequency of Digoxin to no avail (after 5 days) they recommended adding a second heart medicine called Flecainide. Again, anxiety continued for us as this is medicine "for old people" with bad hearts not young healthy hearts like Alison. The fact that they put a dedicated nurse in the room 24x7 to monitor Alison did not help the anxiety initially. After a day of the new medicine Alison was feeling very good actually, again surprising the doctors/nurses.

Heart monitoring roller coaster...

After a pretty rough night, with little or no sleep, we started a roller coaster ride of baby monitor telling us something different than the ultrasound machine. We would gain hope that things were improving and then they would hook up the ultrasound and examine the heart only to find it still in atrial flutter. In the morning ultrasound they saw 1:1 heart rate of about 230 which changed the classification to SVT. Then in the afternoon/evening they ultrasound again and find it right back where it was in atrial flutter. The hydrops/fluid still remained with only slight change for the worse but still not causing them to change any treatment. Alison continued to feel side effects from the medicine, but nothing like what the doctors had expected. One doctor was joking about the fact that she would be seeing blue halos and hallucinating, but Alison's main symptoms were nausea which was being effectively resolved by Zofran. Alison was impressing the doctors, though at the same time the level of the heart medicine in her blood was increasing verrry slowly. Thus not allowing the medicine into the baby's system. This caused the need for continuation of another round of the medicine. Ended the day with Alison enjoying her Ambien - causing her to go to sleep pretty quickly/easily.

Thank God for random 3D ultrasounds... (Part II)

As the entire fam drove to the hospital Alison and I were overwhelmed with emotions. I truly believe that it was at this moment, being full of fear, that the prayers started to be felt. My fear quickly transformed into faith. I reached over to Alison to comfort her and assured her that God is in control of this girl's life. Not sure how to explain the difference, though fear did leave me make no mistake I was still concerned for my wife and unborn baby girl and was ready to do whatever necessary to help them. We were honestly not sure what we would meet at the hospital, but knowing clear and well what happens at the "Birth center" we were not ruling out the possibility of an emergency delivery. We arrived and it wasn't long before they had Alison under high tech ultrasound examining the baby's heart. They expected it was Super Ventricular Tachycardia (SVT) but after a few minutes they declared without a doubt that it was Atrial Flutter. The right atrium of the baby's heart was beating at 460 beats per minute (bpm) and the left ventricle was beating at 230 bpm. Normal is about 110-160 bpm, in sync of course. In addition to the atrial flutter, they noticed fluid collected in both the chest cavity and the abdomen (considered "hydrops"). The amount was significant, but not yet considered a critical amount and they would continue to monitor it closely. They then spelled out the various options and gave their recommendations. The recommended first step, which we agreed to, was to start Alison on a heart drug called Digoxin (aka "Dij")which would be then be passed onto the baby. A medicine used to treat heart failure being used on my perfectly healthy wife, yea a little tough to process that. I did receive a calming phone call from my step-mom though telling me how this drug has the chance of sending the mom into heart failure requiring them to bust out the paddles and shock her heart back into motion :) (in all seriousness, I loved having someone like her on the other end who knew all about this stuff I was being forced to learn about). So with all eyes on Alison and her monitors, she received the first dose of Dij. I spent the first night with one eye open watching Alison's monitors and listening closely to the heart monitor as they checked on the baby every hour. With the baby's heart in flutter still, the monitor they used did not pick up anything reliable - just a bunch of noise.

Thank God for random 3D ultrasounds...

What started as a typical day quickly changed into a day of anxiety, emotions, and tons of prayer. It began with me heading into the office for some meetings and Alison getting Kayla to school. We were scheduled for a complimentary 3D ultrasound with Alison's girl parts doctor at 12:30pm. Alison picked up Kayla for school and we met at Chic-fil-A for lunch before the appointment. It was a great day and we were all excited to go see our baby girl.

Up to this day everything had checked out great and baby was in perfect health. The sonographer who was doing the ultrasound is the same woman who has scanned both Kayla/Lydia in the past and is very good at what she does. What is usually a 2 second wave of her wand to find the face had obviously turned to look at something else (not the face). Very calmly, though unsettled, she left the room saying that she forgot to do something and would be right back. I sensed something was not quite right but could not gauge what it was. Was it our baby? Was it something wrong with the last baby she scanned and she still hadn't collected herself... Then she came back in the room, still unsettled, and announced to us that something was wrong. Turned out that she left the room to call Alison's doctor out of surgery in order to get him to assess and recommend. "The doctor is going to be meeting with you in a minute to discuss what is going on" but something was definitely wrong. Before directing us to the room - she gave her apologies and hugged Alison. Thus began the spiral of emotions. We then spoke briefly with the doctor who explained that something was wrong with the heart but further examination needed to take place at the main hospital to identify exactly what and the next course of action. The doctor would then go "verify a couple things", get a copy of our records for us to take, and then direct us but we would be going to the maternal fetal medicine unit. We waited a couple minutes longer for the doctor to return, both of us were anxious as you can imagine. The doctor returned to tell us "You are going to need to go directly to the Birth Center without stopping. Do not go home. Do not stop anywhere. Go directly there, someone will be standing there waiting for you when you walk in". A few swipes on the phone and a facebook post later friends from across the country and globe started praying for us and for the baby.