3 weeks!

Abigail has been home for 3 weeks now! I must say, it is MUCH MORE DIFFICULT having 2 babies at home verses just 1! "my hands are full" is an understatement :) Not to mention having one that is quite sick! But it is so much better than her being at the NICU! Aiden is doing well and his apnea spells are getting less and less. Abigail cries alot and has many issues- we go to the cardiologists and GI specialists almost once a week to monitor her heart's swelling and her belly. Since we've been home, they have found blood in her stool twice and had to switch her formula and her meds. There have been several times when we have almost gone to the ER since she has started vomitting and screaming inconsolibly for hours at at time. Each time we've called Children's and Women's and done what they have instructed us to do to help. Please continue to pray for her belly. She is still not having regular stools and we can't seem to find a medicine that works well for her. She is also extremely irritable and having some other symptoms the dr.'s can't figure out. She is pretty upset most of the time which is why I'm so thankful people have been coming over to help me hold her (which can be quite difficult to do while I'm nursing Aiden!)
Overall, life has been very good. The Lord has been so gracious to us over these past 2 1/2 months. He has granted us supernatural strength and preseverance when our bodies should have given out weeks ago! He has given us supernatural wisdom and insight when we needed to make critical decisions for her. I have had so much joy in being a mommy! It is so obvious it is what we as women are created to do! It is so much fun just loving on them. I have been overwhelmed by the compassion and generosity of others. My friends and church family have served me in so many ways- meals, their time, cleaning my house, holding babies, the list is endless. I'm overwhlemed with gratitude. One of the reasons we are doing so well is through the prayers and help so many have offered to us. Thank you Lord for the body of Christ! So many have truly placed my need above their own.
The Lord has also been showing me how committed he is to me by walking us through this extremely difficult season. He is stripping away things both in myself and in Ben to make us more like himself. Although this is a painful process- it is well worth it for He only wants to free us from our sin and shame. My prayer is that I would have eyes to continue to see why He is taking us through the fire and what he is trying to cleanse me from.
"I lift my eyes up to the hills, from where my help comes from ...my help comes from the Lord"

Good news and bad news

The Lord has answered our prayer! They did a small surgical procedure on Abigail in order to obtain four biopsies of her esohpagus, intestines, and colon. They found an overgrowth of bacteria in her stomach and also a mild milk protein allergy that could have been causing her intolerance to food. The bacteria is being treated with an antibiotic. The GI doctor switched Abigail off of breast milk to a hypoallergenic formula called alimentum. This formula is already broken down so that Abigail’s sensitive stomach can digest it. After this switch her belly has looked much better and she has been keeping her feeds down. This is great news! The neonatologists were very skeptical that these minor problems could cause such dramatic symptoms. We believe the Lord has heard all the prayers and has moved on our behalf!!! Please pray that she continues to tolerate her feeds.

The same day we got the news about the mild allergy we also got news that Abigail has heart disease. She has a hole in her heart called an ASD (atrial septal defect) that leads to congestive heart failure. This is a hole between her right and left upper chambers (atrium) of the heart which allows unoxygenated blood and oxygenated blood to mix which forces her heart to work overtime reoxygenating already oxygenated blood.The cardiologists said that the hole is of “moderate” size and therefore will likely require surgery to close it. If the hole was small it would likely close on its own. The heart issue prevents her from taking greater volume of feedings because the more liquid she takes on the harder the heart and lungs work. They are giving her a diuretic called lasix to help with her fluid retention. The doctor said he thought she would need surgery within the first year of her life which would be done up at UAB. The doctor did say that there is a small possibility that the hole may close on its own. Please pray 2 things regarding her heart. 1) That she will begin to grow. The lasik helps keep her fluid levels down but also slows down her weight gain. 2)Please pray with us that as Abigail begins to grow that the ASD will close on its own and that she will not require open heart surgery. If she adjusts well to the lasik and begins gaining weight she may be able to come home the first of next week. YEA!!!

Lastly please continue to pray for Katie and me. The 6 weeks of driving back and forth to the NICU multiple times a day is taking its toll on both of us. I am simply amazed at how well Katie has handled this whole thing. Please continue to pray for perseverance and strength as we face the rollercoaster of emotions. Pray that we would continue to find peace and rest in our heavenly Father. We are starting to embrace the reality that Abigail’s health issues are not going away in a few weeks but will be with us for quite a while. As we embrace this fact, we continue to affirm to one another that God was not obligated to give Abigail to us but has done so simply because of his grace and goodness. Please pray that we would continue to trust Him and his wisdom as we care for her in these challenging times knowing that our judgment is often cloudy and marred by what we see but his wisdom is always perfect and good.

Thank you all,

Ben


P.S. Aiden is doing pretty well. He has had some apnea spells but overall is good and weighs a whopping 7.2 lbs!!!

From Katie- I have strongly sensed the Lord's gracious hand upon us the past 6 weeks that she's been in the NICU. There are days we don't feel as though we will make it another hour, but somehow He gets us through and even gives us joy in the midst of it. Now more than ever "the Lord is my refuge and strength, an ever present help in trouble". He has granted us such grace physically, emotionally, and spiritually, He has used the body of Christ to pour out His love and concern for us through others. I'm so very thankful. - Katie

Brokenhearted

After many babygrams, xrays, ultrasounds, and other tests, the dr.’s still had no idea as to why Abigail is not tolerating food. They started feeding Abigail again on Saturday in order to get stool samples to test for an allergy. They were hoping after all the tests that possibly it was just immaturity of the bowels causing her belly to swell and become so distended and that this time she would tolerate it. Last night (Mon pm) they called us to say they had to stop her feeds again. We went in today and met with the neonatal specialists. He believes she has an obstruction of the bowels- which can only be fixed with surgery. However, at this point they cannot tell where the obstruction is (& have no hard evidence that’s what it is) & cannot do surgery until they can pinpoint it. The danger with surgery is that 1- she’s a one month old in unstable condition and 2- it causes scar tissue which can cause more blockage which would need to be fixed w/ more surgeries. He tried to prepare us by acknowledging our frustration now- and saying it will probably only get worse as we continue to walk through this. She will probably be in the hospital for 2 more months (devastating for mommy and daddy to hear) if everything were to go well. He is working w/ a GI specialists & and now a pediatric surgeon to try to understand what is going on with her. While we were there today I watched them start an IV ten times in her feet, arms, and head. Every time they stuck her, her tiny veins would blow. She has bruises and wounds all over her from all the IV’s, PIC lines, blood samples, and test they’ve done on her. She looks horrible. As I listened to her piercing cry and watched them hold her down to stick her once again, the verse the Lord brought to mind was “He was pierced for our transgressions, he was crushed for our iniquities, upon him was the punishment that brought us peace, and by His stripes we are healed.” My heart is broken over my little girls suffering and the thought of possibly losing her, and as I sat in the NICU and wept I was baffled more than ever that the Lord crushed His only son for a sinner like me. It must have brought Him such grief and pain. I wish so badly that I could take it for her, that I could be sick instead of her, but I can’t. There is nothing I can do to make it better- which is one of the hardest things. Ben and I are heartbroken, and sometimes we feel like we are drowning, but we cling to the One who is carrying us and petition for a miracle. Our prayer is that the Lord would divinely intervene and heal her fragile body. That no surgery would be necessary and she would miraculously begin to tolerate feedings. Please join with us in this prayer. If it be God’s will for surgery, please pray the dr.’s will have wisdom, find the blockage easily, and be able to treat it effectively.

“Fear not, for I have redeemed you. I have called you by name, you are mine. when you pass through the waters, I will be with you; and the waves, they will not overcome you….” Isaiah 43

My greatest comfort is that when I can't hold Abigail- He is; when I can't comfort her- He can; when she is sad, lonely, scared, & in pain- He is there for her, holding her, and loves her even more than I do. Thank you Lord for your presence both with us and with her at the NICU. You are our strength, our rock, our shelter & fortress- we run to you.

Pray for Abigail

Please pray for Abigail-Her condition has worsened. They had to stop her feedings, put her back on IV fluids, & put a tube down her throat to constantly pump her stomach. The dr.'s can't figure out what's wrong with her. She either has an infection, an obstruction of bowels (which they would fix w/ surgery), or she's intolerant to food (not sure how to fix this). We are very worried & emotionally overwhelmed. It's so hard to watch my baby girl suffer-she gags constantly because of the tube and she just cries and cries because she's hungry. There is nothing we can do to console her. However, it's even worse having to leave her there alone then it is to listen to her cry. It has been so taxing trying to pump every 1 1/2 hrs, feed Aiden every 3 (and learn how to take care of a newborn for the first time), and make the trip up to the NICU (which usually takes about 5 hours everyday by the time we drive 1 hr, pump 2x there, and see her). Sometimes I'm so upset when I get home from the NICU that I want to quit, but I know I can't because Aiden needs me too. My heart is constantly torn. We are exhausted and desperatly need the Lord's grace and mercy to make it through each moment. The past 19 days have definitly been the hardest thing He has ever walked me through...I find myself playing the what-if game or second guessing myself alot. Mostly though I'm just so sad she's sick.

The Amazing Race

Tue-Friday
Aiden came home Tuesday! He's so much fun and we are so glad he's finally with us all the time! We love being with him. We are trying to get adjusted to having our first newborn at home, get him on a schedule, teach him to breastfeed, and still travel 1 hour away roundtrip to see Abigail at the NICU. This has been a difficult task since I pump every 1 1/2 hr, feed him every 3 (but it takes an hour), and it takes so long to get to her. This has been a quite stressful so in the midst of it all, we have what's called "The Amazing Race". Aiden's apnea monitor will alarm, all 3 of us will take off running to the nursery (nearly killing each other through doorways, ect.) and we will stimulate him to get him to breath. It isn't funny that his monitor goes off, but it is quite hilarious to see us trying to get to him. Especially in the middle of the night when we can't see anything. Hopefully he will grow out of this soon and breath consistently on his own! Abigail is doing well, increasing her feeds, and they took the pic line (a massive IV that runs up through her leg) out of her foot!

Update

Normally I use my middle of the night pump times to pray for my children but I wanted to send a brief update on the past few days. Our new routine is to pump every 1 1/2 - 2 hours and travel back and forth all day between Providence hospital and USA Children's & Women's to feed/be with Abigail and Aiden. We are very tired from all the traveling, but so pleased that both children are doing so well. I'm so very thankful for my mom who has been here since they were born. We could not have made it without her. Aiden is doing very well and gaining weight. He has had some serious apnea episodes where he stops breathing and his heart rate drops. The nurses have had to stimulate him to get him out of it. Because he's had these episodes frequently, they are sending him home on an apnea monitor that he will wear all the time. It will alarm whenever he stops breathing. Abigail is still on IV fluids and proteins, but they are also slowly increasing her food so as not to overirritate her bowels (she's currently at 12 cc's; 30cc+1 oz). They found a heart murmur on her and did an echogram. This showed a hole in her heart that either could be perfectly normal or a problem- we won't know until later. Pray that it is normal and will close on it's own. Overall she is doing well considering her tiny size! Thank you so much for all your prayers. The Lord has answered so many and we feel His presence with us during this time.

Twins arrive!

Abigail at the NICU

Daddy's hand w/ our 3 lb little girl

Day 2 before they were separated

Aiden w/ his feeding tube