Some answers...Finally

As Rachel's mom I can honestly say that I stand here today with the biggest lesson of patience that God has ever taught me. Two and half months ago sweet Rachel was born into this world to be whisked away by a wonderful team of doctors and nurses and to be subject to test after test after test over the course of her short life. Many of the tests confirmed what wasn't ailing Rachel but none could really confirm what was ailing her or why. Last week we were able to finally get some test results confirmed. The doctor looked at her EEG and said there was still some evidence of seizure activity, but no visible seizures were noticed. She will continue to take seizure medication. He read the CT report from the radiologist and it confirmed that Rachel does not have a calcium deposit in her brain (praise God!)...that little spot on her brain was a bleed. However, her pediatric neurologist did find some soft tissue or "dead spots" on her brain around the area that the bleed was. He sent my husband to the hospital to pick up the film of the CT scan. While my husband was gone the doctor had me wait in the waiting room. At that point he did not explain the extent of her injury or what it meant for her. I can remember being in the waiting room wondering what caused parts of baby Rachel's brain to die. What would happen now? Would it get any worse? Would the damage continue to spread until all of her brain was dead? That hour was one of the longest hour of my life. I remember telling my husband about the blind man that Jesus healed. The one the people questioned Jesus concerning the cause of his blindness. Was it his sin or his parents' sin that caused him to be blind? Jesus answered that it was neither, but that God might be glorified. That thought was what kept me sane that hour. My husband had to leave after giving the doctor the film so I was able to spend some "one on one" time with Jesus. Right when my husband called to get an update, the doctor came out to the waiting room to get me. My first thought was "Oh no...how often does the doctor himself retrieve a patient from the waiting room. This must be really bad." I quickly hung up on my husband (sorry, dear) and hastily followed the doctor to an exam room. That's when he told me the news. He believes the soft spots were caused by trauma during her delivery. When she was born she had meconium (stool) in her amniotic fluid and the cord was wrapped around her neck (though not tight). Either of these issues could have caused her to have a stroke at birth. It is scary to think of your little baby having a stroke but it is certainly better that the alternative! The dead tissue would not spread and she would not get any worse! Praise God for the news! We will not know how the injury will affect her until she is at least a year old. I guess God is not done teaching me patience! There is a 50/50 chance that she will live a "normal" life. No matter the outcome, we will continue to praise God for who He is and what He accomplished on the cross over two thousand years ago!

Keep on Truckin'

It has been a few weeks since our last post so I thought I'd give an update. It grieved me to my soul to make the decision to change doctors...for now. Rachel's primary care doctor has been through everything right along side of her and we love him dearly, but my husband and I felt that it was probably best for her to have a pediatrician since she has had so may bumps in the road since her birth. We hope that we can return her to our family doctor when she is a little older. Rachel's eating difficulties have caused her to loose a little weight. We have been going in circles with the weight thing. One dr said she weighed 8lbs, another said 8lbs 12 oz and her new dr says 7 lbs 14 oz. It is little less than a pound any way you look at it, but to a two month old it must mean a lot. The new doctor has a plan of action for putting weight on her so I pray all is well in that area. She was able to get some of her vaccines but not all of them because of her history of seizures. Her last EEG showed signed of seizure activity so she has been scheduled for a 48 hour VEEG which she will be admitted for. She will also have another CT scan. Hopefully we will be able to find out some answers with all of the testing. We are hoping to get a nurser practitioner to keep Rachel so I can return to work. Pray that that will turn out well. Even if not, God already knows the answers and what the future holds for baby Rachel and for us and that gives me the strength to keep on truckin'!

ER Visit

Baby Rachel had another seizure around midnight last night. At the doctor's earlier instructions, I took her to the emergency room. They checked her medication level and said it was normal. They thought it may have been the sedative she was given for her MRI yesterday. I spoke to her doctor today and they said the sedative would not have caused it but possibly the MRI itself. He has had me increase her dose. Be in prayer that God works it all out.

Possible Seizure

Baby Rachel had what looked like a seizure tonight. I am 90% sure it was one. Please pray that the doctor will see her tomorrow and check her medication level. Pray that God take care of Rachel.

Sick Baby

Baby Rachel had her MRI today. She should know the results at her next appointment in a couple of weeks. Please be in prayer for good news. In the mean time, Rachel seems to have gotten sick. She is very horse and it appears that her throat is hurting. This has really impacted her eating in the last day or two. If she gets worse over the night I will take her to the doctor to see if he can find the source of her ailment. Pray that she feels better soon so she can eat. It is so difficult to see her in pain and know there is nothing you can do about it. She had a good day or two of eating and then regressed to fighting again. It breaks my heart to know that "Momma's arms" are no longer a place of comfort for her. Instead, you can see the torment in her eyes each time I pick her up to feed her. I cannot imagine the fear she has every two hours as her mind registers what is to come. I know feeding is supposed to be a comforting experience; a time of bonding between mother and child. Instead it is a battle for us both. Pray that God would intervene and make that time what it ought to be for both of us. I think I am beginning to understand what a nurse must go through...knowing what they are about to do will hurt but knowing it must be done. Pray that Baby Rachel and I won't have to "fight" through feedings and that we can enjoy one another's company. Pray that she get well from whatever is ailing her little throat at the moment. Pray for stamina and continued faith for Rachel's parents. Pray that God's will be done in her life.

More Tests

Baby Rachel seems to have hit a bump in the road with this eating thing. She started vomiting yesterday and today I decided to take her to the doctor early instead of waiting for her next appointment. The doctor thinks her troubles may be stemming from reflux and has ordered her to have an upper GI done. This is basically an x-ray to see what is going on. Please pray that God leads the doctors to discover the cause of her feeding issues. Things seem to get better for a day or so then get worse. I know God has a plan for all the things in Rachel's life. I pray that He keep her safe as he fulfills His will for her.

New Prayer Request

Rachel is doing well in so many areas, but she is struggling with her eating still. She finally got the suck and swallow coordinated (praise God) and the beginning of last week was great. After a few days of consistent eating, Rachel began taking just a tiny amount of milk and then screaming...for a long time. It was obvious that she was in pain. She would not finish her bottles and that worried us. She would only take about half of the milk she needed. We called the doctor and he said it sounded like she was developing colic. News no mother who values sleep and sanity wants to hear. My heart went out to her each time she tried to eat. It is so hard to see her in so much pain knowing I must press on with her feedings so she will get the nutrition she needs to survive. Friday and Saturday her diapers told us that she was needing to take more milk in a desperate way. I feared she would end up in the ER by the end of the weekend. We prayed and asked others to pray for God to intervene. Today I am so pleased to say that she is taking almost all of her bottle! She still has fits where she screams and it is difficult to get her to eat, but just knowing she is getting enough is such an answered prayer. My husband and I ask you to please pray that this colic stuff will vanish and she can enjoy eating. She has been through so much and I just pray for her to "have it easy for a while". Pray that God give my husband and I strength to continue to care for her. Praise God for His work in her already! Even one day has been an improvement. Our God can accomplish ANYTHING!

Many Thanks

I wanted to send many, many thanks to all those praying for Rachel's recovery. I thank my family, my husband's family, our church family, the NICU staff, her doctors, our friends and co-workers, and all those who pray for Rachel. We could not have done this without your support, your cards, flowers, phone calls, visits, meals, child care for Rachel's big sister, love offerings, and most of all your prayers. We love you all and pray God's richest, most abundant blessings for each and every one of you!

The Doctor Visit

Rachel had her long awaited doctor visit today. The CT scan results were inconclusive. They still are not sure whether it is a hemorrhage or a calcium deposit. The doctor said that if it were a hemorrhage it should have dissolved by now. He was rather confused, though. He said the spot appeared to have shrunk which is not characteristic of a calcium deposit. Rachel will have an MRI in a couple of weeks and an EEG (which measures her seizure activity) a couple of weeks after that. If she has not had any more seizure activity when they do the EEG, then they will likely take her off her seizure medication. We ask for prayer for Rachel to have no seizure activity now and when they take her off the medication. I am apprehensive about taking her off the meds. I fear her seizures will start back, but I have to trust God to continue to carry her through this. My husband and I will be praying that the spot continue to shrink. Rachel is in God's hands and He CAN be trusted. He has been so faithful through this whole process. I could not imagine going down this road without Him. I thank Him for my salvation and for His constant presence in my life. What a God! He is awesome, sweet, loving, caring, forgiving, generous, all powerful, all knowing, trustworthy, strong, faithful, mighty, amazing, my fortress and deliverer, He is just, He is holy, His love is abundant, He is righteous...He is GOD! WOW!

CT Scan Miracle

Sept. 25th Rachel went for her second CT scan. I witnessed a full blown miracle right before my eyes. My husband and I were really concerned about how they were going to keep Rachel still for the CT scan. We didn't want her to have to get stuck again (she had been poked and prodded so many times in the NICU that I couldn't bear the thought of any more). We didn't want her to have to be sedated again. This would likely mean another feeding tube, etc. until the sedation wore off. All we could do is pray that God would somehow make her still long enough for the scan to be over. Low and behold...here's what happened. We were in the waiting room getting ready for Rachel to be called. It was past her feeding time (nothing like trying to keep a hungry baby still). I decided to go ahead and start feeding her hoping to get through before they called her back. Rachel got half way through her bottle when the tech came in and said it was her turn. My human brain started swirling things, "Now she will be really mad that she can't finish her bottle" I thought. She and I were escorted to the "big doughnut" and I was instructed to lay her down. She was not really crying, but wasn't still either. I put her down with a silent prayer that somehow God would prevail and this thing would turn out okay with no sedatives. As soon as I laid her down she literally went straight to sleep! It took her all of ONE SECOND to fall asleep. She stayed still the entire test and woke right up as soon as they were done with the scan. All I could do was thank God and cry tears of joy because I KNEW what Christ had just done for Rachel and I. There was no doubt at all that God was in that room at that very moment taking care of one of His children. I am still amazed at His power. What a mighty God we serve! We won't know the test results until Monday, but are continuing to pray for healing for baby Rachel. Pray that God grants healing to baby Rachel and that the CT scan comes back missing one troublesome spot that was there just days before!!!

The Big Day

On Sept. 16th (my original due date) we got to take Rachel home!!! How ecstatic is that?! Wow, God's so good. We spent the night before in the hospital with her (it's their way of letting you "test drive" your kid). It was actually a great experience because the nursing staff was right across the hall for anything we needed. The doctors and nurses were all great. We were so thankful to have the NICU in our home town. I have to thank all the doctors and nurses that I can remember caring for my precious Rachel: Thank you to Dr. Harlan, Dr. Brigges, Dr. Cox, Dr. Murthy, Audry, Allison, Dale, Claire, Patty, Jean, and thanks to all the other wonderful nurses that I cannot recall your name. You all did a FANTASTIC job with our little one. Many thanks to Dr. Shaw for his great care for me while I was in the hospital and thanks to Dr. Alexander for continuing to care for Rachel. My utmost thanks to My Savior and Lord, Jesus Christ for all Your work in our lives. Rachel would have never made it this far without You.

No More Feeding Tube

On Sept. 14 they took out your feeding tube! Hallelujah! Praise God you are eating enough on your own. This is the last step to taking you home. Some of the test results came in and they were all negative for the various things the doctors were checking as a precaution - God at work again. This journey has been tough by all means, but we have seen so many answered prayers that it's amazing. His grace continues to amaze me. The strength He has given my husband and I is nothing short of a miracle. We thank God for all He has done in Rachel's life so far.

Graduating to Intermediate

Rachel graduated to intermediate! I went in to check on her on Sept. 10th and she wasn't in her incubator. I had to search the NICU to find her! I was not expecting to have her move up so quickly (that's what I get for doubting God!) The intermediate side is where they go when they are no longer in need of "critical care". This means she wasn't on and IV, her temperature was being regulated by her (with ALL glory to God) and her SAT levels and oxygen intake were good. Her monitors looked good. It was a pleasant surprise! Again, we had to praise God for His faithfulness.

Feeding Troubles

Rachel had to have a feeding tube inserted in her nose. She still can't get the having of eating. Since she doesn't have any IV fluids or nutrients anymore it is vital that she get her milk in. They took her off seizure medicine for a day to bring her levels down some. We prayed that she would not seize during this process and she didn't! Praise God for answered prayers! He is SO awesome! Rachel is continuing to grow little by little. We know God is in control and He will bring Rachel home at the perfect time.

Feeding Time!

The doctors are finally let Rachel eat! It took one and a half hours for her to take 15 ml of milk but it's still progress. She has had to have occupational therapy to "teach" her to take a bottle and it has been a struggle but Rachel will get through it. We trust that God will be faithful as He has in the past. We are still praying for Him to remove that spot on her brain. We also pray every day that God will save her soul at an early age and continue to use Rachel for His glory! We did have to trust Him ALOT on this day since the hospital "kicked me out". Okay, they discharged me and were very understanding, but still, I had to leave my precious baby and go home without her. She did come off oxygen for a day but had to go back on oxygen the next day. She was still having trouble regulating her temperature so they had to keep her in an incubator. She is a trooper though!

Heartbreaking News

I can honestly say that it was no coincidence that we heard the news on Sept. 6th. My husband and I went in to check on little Rachel and that's when the doctor tracked us down. What we had feared had just happened. "Rachel has a spot on her brain. This is what is likely causing the seizures. It is a very small spot. We are not sure if it is a calcium deposit or a bleed on her brain. If it is a bleed, then it will be reabsorbed and will eventually go away. If it is a calcium deposit, then it will stay there. It is too far in her brain to remove. We will wait a few weeks and do another CT scan to see if it shrinks or disapears." the doctors tells us all this at once and our brains are swirling. He took us to see the scanned image of our baby's troubles. That image still haunts me, I must admit. Right away I began to pray for Rachel knowing this was going to be a battle, not just in her little body, but also in her parents minds. We needed Jesus then more than ever. He is faithful as God's Word reminds us. We had to trust him. Just after I prayed I heard my husband ask, "Could it be cancer?" Why didn't I think of that, I wondered. Right then my heart sunk even more. But sure as God is faithful, the doctor assured us that he was almost 100% positive this was not cancerous. Praise be to God again and again. We looked over Rachel one more time then we turned and walked out of the NICU. Both of us had held our composure until we rounding the corner of the elevator. One look at my husband was all it took to break me. We quietly walked back to my hospital room and I knew we had to talk. Just when were about to really break down, God sent us a much needed diversion. A precious friend from church came in at a time we needed one the most. I know Kristy has no idea how much she was there for us that day. I pray God bless her bundantly and I praise Him for sending her to us at exactly the right moment. She encouraged us more than she will ever know. After she left God reminded me of something that happened one year ago to the day. On Sept. 6th the prior year one of my dearest friends found out the news that she had cancer. Right then I remembered all of Jennifer's struggles and all the things God did in her life. At that moment God showed me that I could trust him with my baby...no matter the outcome. If he could do miracles for Jennifer, then he could do miracles for Rahcel as well. In the midst of turmoil my heart was lifted and God carried me...I praise God for friends He sends our way. How else would one make it through a crisis?

Day Three - Held

Day three was an exciting one. They winged Rachel off the sedative and she did fantastic. We were so proud of her. We even got to hold Rachel that day. She felt so comforting in my arms. She looked like and angel, or at least what we humans tend to think angels look like. The seizure meds were working and there was no sign of any seizure activity. Rachel still looked peaceful. it was a good day for all of us. We praised God and prayed and prayed for those test results.

Day Two - Tests and more Tests

On day two the doctors ran all sorts of tests on both Rachel and I. The told us that they would likely not find out the cause of the seizures and that was really the best option. They also said they were going to run a CT scan of her brain. They assured us that it was routine for all newborns with seizure activity. They also told us the worst possible scenario would be that they find something on the CT scan. Right away we started praying they would find nothing. Rachel had not been allowed to eat yet and I was so afraid she was going to starve. I inquired with the nurses in NICU about when she would be able to eat. "Maybe tomorrow" they replied. We sit and play the waiting game. Torture for a parent who can do nothing else for her child. Meanwhile Rachel is still having "episodes" and can get no rest. Both my husband and I plead with Jesus that he will have mercy on her and give her body some rest. Praise God! They tell us that they have sedated Rachel to give her the CT scan. When we went in look at her she looked so peaceful. She looked the best than she had since she was born. They also had her on seizure medication. Both drugs made her sleep and sleep...for days! I thank God for His awesome power and His love. He gave us so much support that day. People called and showed up from every direction praying for Rachel and us as well. We even had visitors we had never met before come in and pray for Rachel's healing! What an awesome God we serve!

The Beginning

It all began September 4th of this year. I went into work just like any other day. All day my hips hurt and I really didn't have any idea why. By the afternoon I found myself leaving my brother-in-law's surprise party and heading for the hospital. I was not at all sure what was wrong, but I did not want to take the chance that something was wrong with the baby I was carrying. After about a 30 minute wait the hospital staff put me in a room and hooked me up to all those baby monitors. The look of relief on my husband's face when he heard our little baby's heartbeat could have melted a hardened criminal. She was alive and seemed to be well. At that point I fully expected the nurse to come in and say all was well and we could go home. Instead, she came in and looked pointedly at me and said, "We're having a baby tonight!". To say the least, I was quite confused. At only 38 weeks along, I was not quite ready to meet my little bundle of joy. There were lots of things planned in the coming week and I had already set up a time to have a C-Section for the following Monday. Why the hasty surprise, I wondered. She then told my husband and I that our doctor said the baby's heart rate was elevated and I was contracting sooo...he was coming in and we were having a baby!
The C-Section went well (I even got into trouble from the anesthesiologist for talking too much!). Around 9:30 that night baby Rachel was born. She was beautiful. My next thought was about how little she was. It took her a while to cry but when she did it was music to my ears. That night I noticed what appeared to be seizures. I mentioned it to the nursing staff and she told me not to worry and that it was normal newborn behavior. I noticed that night that Rachel didn't sleep all night long. She cat napped a coupled times while I was holding her, but she just didn't rest well. The next morning the doctor came in and they took her to the newborn nursery for him to look her over. About and hour later I sent my husband to see about her and he came in and said they were admitting her to the NICU (neonatal intensive care unit). While I wasn't totally shocked, I was concerned so I went to the nursery to see what was going on. When I got there, they were whisking her away and I barely got to touch her face before they took her. I asked the nurse why they were sending her to NICU and she said her color wasn't good and that they witnessed what they thought were seizures. I got a little anxious but knew at that point I had to hand my precious baby to Jesus because I knew I could do nothing for her. I had to put my total trust in the One that made her.
Later that morning we got report that they were calling in a specialist to look at Rachel. Her SAT levels were low and she was on oxygen. Her little body seemed taken over by the seizures and she still could get no rest. It was heartbreaking looking at my precious newborn knowing how tired she looked and how her body must have been aching from the seizures. There were so many tears and so many prayers for Rachel that day. God had her in His arms and was beginning to work a miracle in her life that even we could not comprehend. Praise God for all things...this is what we learned that fateful day.