6 days in the NICU

Natalie had her first surgery to close her back 24hrs after she was born. It took about an hour and everything went successful.

On Day 3 we had a big scare. Her vitals went down and had to be placed on oxygen and fed through a tube, we feared that she aspirated milk and had problems swallowing. An occupational therapist came to examine her and gave us good news. Natalie was just so congested due to the tube that was placed down her throat for surgery she was just having a little trouble breathing. It cleared up real soon.

On Day 4 we finally were able to hold her in our arms. The feeling was indescribable. It was a very emotional moment. I waited 4 days to hold her. Seemed liked forever. Thinking back on this moment, my eyes fill up with tears. On that same day I was released from the hospital. It was a very emotional ride home, everything was just so over whelming. I just wanted her home and not worry about anything else in the world.

Frank and I went back up to the hospital in the morning to feed Natalie and good news expected us. They first asked us if we wanted to Room-in with Natalie. Frank and I were so confused. We both asked that if that meant she would be going home and she was. =) So we went back home packed our bags came back to the hospital and spent the night with Natalie all by ourselves.

 Natalie was out on Day 6 from the NICU. We were all so shocked at first we expected for her to be in the NICU a minimum of 10 days which was what her neurosurgeon said, but she recovered quickly. The power of prayer.

Natalie's arrival

Yes I know its been over a month since I wrote in this blog.. but its time to catch yall up now. =)


Natalie was born Sunday, September 11, 2011 at 4:51pm. After 14 hrs of being in labor they had to do an emergency c-section because little Natalie was ready to come out. My c-section was originally scheduled for Sept.14. It all happened so fast, I wasn't an emotional wreck that I thought I was going to be. It all seemed like a blur, I was in shock it all seemed that it was happening too soon. But once she was finally born they pulled her aside cleaned her up and Frank said they placed a "Ziploc" bag on her bottom half to protect her lesion from any germs and rushed her to the NICU. After finally being in the recovery room for an hour they rolled me down to see Natalie in the NICU.

Where I am now.

          I know I haven't updated this blog in over a month, but I have thought about it everyday. I just couldn't get myself to get all my emotions together and write them down. In this last month we have learned that Natalie has a perfectly normal brain her ventricles are not dilated. Hope and pray they stay that way. I am currently 36 weeks and 3 days and in about 16 days (Sept.13) Natalie will be born at Medical City and will have her back surgery on the 14th. She is breech but at this point it doesn't matter since I will be having a c-section to prevent any stress on her.

          Since we found out about Natalie's defect, yes its been hard, but I have always pushed it to the back of my head the idea of it. As the date approaches I find myself so helpless at times. Its time to face the truth which I have dreaded so much. I don't know why this has happened to us.. but I just have to keep on going. I've cried so much just because I am scared and so sad that this has happened to us. I just hate that I will live for that question for the rest of my life, all I can say is I am sorry Natalie. It just breaks my heart that I can't do nothing to fix this or start over.

        Yes, I cry out of the blue because of it, and some people just don't understand, my child has spina bifida yours doesn't. I understand that people keep telling me it will be alright but regardless I wish she wouldn't have to go through any of this pain. I feel as if nothing can heal my pain, I just want her in my arms already so I can just cry all this out.


To anybody that reads this, I would appreciate prayers for Natalie, Franky and myself. We have been strong through this but it seems like we need a little push at times to keep us strong. I will try and update this blog as much as I can when she is born, writing in this blog is very hard sometimes (emotionally) but it helps so much afterwards letting all out.



       

Scottish Rite

The day I was waiting for is now gone. It was a bittersweet appointment. Bitter because it was a little wake up call from what we are facing and sweet because I know Natalie will be in great hands.  Natalie's developmental specialist (Dr. Adams) helped us gain more knowledge on what to expect when she is born, he informed us that when she is born she will have surgery within 48 hours of birth and will be in the hospital a max of 10 days if no other complications arise. They will do some testing but not much on her until she is 8 weeks. They will be closely monitoring her brain to see if the fluids are slowly increasing if it is then they will perform surgery for the shunt, which will delay her going home but if it all seems good than we can take her home sooner.

Dr. Adams also went over a timeline on how Natalie will be taken care of. We won't be going to Scottish Rite much in the beginning, much of her learning will be done in the play mat at home, there will be certain life stages where we will go to Scottish rite, like crawling, standing, walking etc.

So far everything seems like its falling into place. I know God will help us through this.

Week full of appoinments

-I have finally met Dr.Frieden, my obgyn that will be taking over from now until birth. I will be delivering at Medical City in Dallas, this will ensure that the baby and I will be together. =) I will be having a c section so she can be stress free and ready for the surgery to close her back when she is born. I will have to be at the hospital Sept. 14 at 10am and the c-section is at 12pm.

-Natalie has a sonogram about every 3 to 4 weeks with Dr.Peters. Last visit was June 16th, at that time Dr. Peters informed us that her ventricles ( in the brain) were a little abnormal and if they kept growing she would have to get a shunt implanted at birth. Nothing much we could do but accept it and just make sure she has all she needs when she is born. Yesterday, July 13th (30 weeks) we went for another sonogram, she now weights 3lb 7 ounces and her ventricles are perfectly normal and it is a for sure that she will not need the shunt at birth. THANK GOD! This news has been the best news in a long time. Our baby will be home way much sooner than we expected.

- Tomorrow is a day I have been waiting for the longest, our prenatal appointment at Scottish-Rite. =) Hope this can only help me.

Medical Expenses.... not to worry about it =)

I was approved for Medicaid, =) oh so happy because of it. Some other things in life aren't going the way we would like them to but I know that if this was meant to be God would make a way for me not to worry about it and just leave it in his hands. I have my own private insurance but just that alone we were still looking at a big chunk that would of had to come out of our pockets and with Natalie having to have surgery when she is born the cost was just going to go up, but my main worries are now gone. =) Im just sooo thankful to God that she will be in great hands at Medical City. All i want is for her to be taken care of and have everything she will need.

What we know so far of Natalie's SB

Its been almost two months since Natalie was diagnosed with SB, in that time we have done several tests, and seen several Doctors that are helping us understand SB better. We know what we have to do now in order to give her everything she will need. As soon as she is born she will be moved over to Children's to have surgery on her back to remove the bubble and close up her back. There is no cure for SB, just treatment. Natalie's lesion is L5 to S1, Dr.s don't know specifically where it is but that is where the MRI showed the lesion to be around. Dr.Weprin, Natalie's neurosurgeon gave us a good prognosis, again its just a prognosis but with that prognosis we have gotten so much faith and hope that it will all be ok. Dr. Weprin informed us that children born with SB have normal IQ levels, look normal, some even play sports, get married, and have children. Dr.Weprins prognosis was that she will most likely need ankle braces, or worst case a walker. Most children with SB also develop hydrocephalus but so far Natalie doesn't show any signs of that, we pray it stays that way, but fluid does start retaining on her brain she would also have surgery to install a shunt which will help the fluid leak down to her stomach. Another issue Dr. Weprin made us aware of is that Natalie might have uncontrollable bladder and bowel movements, the problem with that is that she might not be able to control it, as a baby that is fine the problems start arising as she grows older but again he informed us that their are ways of preventing that and surgeries for it as well. On July 15th we have an appointment with Natalie's developmental specialist at Scottish Rite we have so much hope he will also help us out so much. I am actually excited about this Dr. he will be a grand help on helping us prepare for her. He will be able to show us and pair us up with other parents dealing with the same issues and help us financially as well.

I don't know why God has done this to us, but the only option we have now is to be strong for Natalie.

May 3rd

So anxious for this day. We had an appointment real early in the morning for an anatomy scan to determine the gender of the baby with Dr. Peters. We were both so nervous and happy to find out what we were having, the nurse came in and did the sonogram, looked over everything, left the room and informed us that the Dr. will be in shortly to go over everything we were seeing on the screen. Everything seemed normal so far. When Dr. Peters came in he introduced himself and performed the sonogram. I kept staring at him for an answer if it was a boy or girl, but it seemed like there was something else he was looking for. I felt his shift immediately switch up on us and then I knew from the bottom of my heart something was wrong. After a couple of minutes of him examining the baby he let out a big sigh. I immediately knew something was wrong, he hadn't even said anything to us, but my heart was starting to break into a million pieces. He informed us that the baby had Spina Bifida ( myelomeningocele ) the most severe type of spina bifida.  Immediately I broke into tears, I didnt know exactly what it was besides the fact it has something to do with the spine and it wasn't good. I remember my heart filling up with sorrow and seeing Frank's face full of confusion because he just didn't know what it was. He just stared at me and I nodded my head and he bursted into tears as well. I will never forget this day, until this day I remember it as if it was yesterday.

When we thought everything was going to be perfect.

Frank and I always thought we couldn't have a family, it just wasn't happening. But on January 19th we found out we were expecting. Our first Dr. visit with our OBGYN was on February 17th. May 3rd was the scheduled date to find out the babies gender. Like all couples expecting, that date seemed like an eternity away. Before that appoinment they ran blood work for neural tube or any other abnormal signs. So far everything seemed normal, the Dr. was not concerned with anything.