Dear God,
You could offer me a billion dollars, a lifetime of bliss, and the promise of a baby girl who was 100% completely healthy and she would live to be 102, yet, I would not give her back to you. I would not trade her for the world. But I will tell you this. I hate RTS. Absolutely hate it. I will never understand why you put these children through what you do. Why the pain and suffering? Why make life so much more difficult for them than it should be? I don't understand it. I don't expect I ever will. I have kept my faith that you have given me and my family the strength to deal with this and to help Brooklynn through all of her struggles, but why have you given her these struggles? None of this makes any sense to me. I am trying to find the answer to this. She is the most beautiful amazing little girl I have ever seen and could ever imagine. She is always so happy and so sweet and she can put a smile on the face of anyone! And I mean...ANYONE! She smiles and a stranger walking by will stop to talk to her. Did you do this because it's true, nobody is perfect? You made her so beautiful, friendly, loveable, and just truly amazing. Is that why you had to throw RTS in there? Because she couldnt just be who she is without the struggles. I am keeping my faith in you, and I hope one day that you will show me the answer to this. I thank you for what you have given me. But why have you given Brooklynn what you have given her? Why have you had to make her life so much harder?
Love,
Katie
Tim and Katie
My Prince
My Princess
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Brooklynn's Neonatal Woe's
- Born at 5 lbs 8 oz. she was less than 4%tile in weight
- At birth she went into respiratory distress and was immediately taken to the Neonatal ICU and put under an oxygen tent for approx. 18 hours
- At day 2 of life she had shown difficulty feeding due to uncoordinated suck and swallow and required a combination of NG tube and oral feeds.
- She had hypoglycemia and jaundice which was mild enough to not require any treatment.
- Day 2 of life she had an Echocardiogram performed on her heart. It demonstrated a small PDA and a PFO with mild pulmonary stenosis and a bi-directional shunt. There was a domed pulmonic valve and an increased right ventricular pressure. She had a single episode of bradycardia.
- A swallow study was performed during her NICU stay which showed aspiration into her lungs and began feeding with the help of a Speech Pathologist 2 times a day with the rest of her feeds through an NG tube.
- She was discharged from the hospital at 18 days old on a heart and apnea monitor with an NG tube for her feeds.
Brooklynn's Medical Woe's
- After seeing an Emory Orthopaedist and an Emory GI Specialist, we were sent to Egleston Childrens Hospital for a few outpatient labs; an ultrasound on her hip to make sure it was in place due to her contracture in her left leg, an Upper GI to show possible GERD (reflux), and a swallow study to see if she was still aspirating. The ultrasound on her hip demonstrated that her hip was in place and all was well. The upper GI had shown that she did infact have reflux disease and also had shown unexpected Malrotation in her small intestines. We never made it to the swallow study as she was admitted through the ER for immediate emergency surgery to correct her Malrotation.
- On March 2, 2010, Brooklynn was admitted to Egleston Childrens Hospital and taken to the operating room for open surgery. She underwent a LADD procedure This included a duodenostomy repair of duodenal atresia and annular pancreas, placement of gastrostomy tube (G-tube) and an appendectomy. During her stay, she was seen by an Emory genetics doctor and was clinically diagnosed with Rubinstein-Taybi Syndrome at 6 weeks old. She was discharged 15 days later on March 17, 2010.
- Home for 40 days, Brooklynn had many choking spells due to Aspiration. Scheduled for surgery sometime late June or early July, Brooklynn had a choking spell in which she turned blue on April 22, 2010 and was immediately re-admitted to Egleston Childrens Hospital once again.
- April 26, 2010 Brooklynn was taken to the operating room for a Nissen Fundoplication to prevent reflux and hopefully cure her aspiration issues. This thankfully was completed laproscopically. Brooklynn was discharged 2.5 weeks later.
- During her inpatient stay at Egleston, A spinal ultrasound with a follow up MRI was completed per our request which showed an abnormally low lying spinal cord. A inpatient consult was completed with the Neurosurgeon and was decided, although aruguable, due to her syndrome, tethered spinal cord surgery would be later performed to increase her chances of normal development.
- After her discharge, Brooklynn was taken to Chattanooga, TN to meet RTS specialist and genetics doctor, Dr. Cathy Stevens. During her assessment, part of Dr. Stevens finding showed either a dislocated or missing left knee cap. An appointment was made immediately after to meet with the Emory Orthopedist once again.
- After meeting with the Orthopedist, an Ultrasound was completed at Egleston on her left knee. We've just received the results. Her left knee cap is smaller than the right one and dislocated. This will require knee reconstruction surgery scheduled on September 22, 2010.
- Surgery was completed on November 3, 2010 at Egleston Childrens Hospital on her tethered cord and her dislocated left patella. The neurosurgeon completed the laminectomy to release her tethered cord first. Everything went smooth. The orthopaedic surgeon went next to repair her dislocated left patella. After going in, he realized her left leg was a little more difficult than expected and her incision was rather large. Post surgery she was in a full leg cast for 6 weeks and now continues to be in a KAFO for approx. 20 hours per day. He completed the surgery, but there is no guaruntee that her patella will remain in place due to her low muscle tone and a higher probability to dislocate again. So far everything has been fine and she is healing well, although slow. She continues physical therapy 2 days per week to learn how to use her legs and walk. Her therapist is also using E-Stim therapy on her left knee to help wake up those muscles that have been sleeping since surgery and get her leg moving again. Lastly, her general surgeon went in the OR to repair the granulation tissue surrounding her feeding tube site. After repeated efforts of trying to rid the granulation tissue, this time...it WORKED! Yay! No more mess! All in all, her day spent in the OR was a huge success. I loved that all 3 surgeons were able to work together to keep her from having to repeat going under anesthesia more than she has to. All together she spent about 7 hours in the operating room that day and spent a total of 3 days inpatient..which was a shock! She had not left the hospital in less than 17 days prior to this surgery so we were ecstatic to be able to come home so soon.
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Oh Katie,
ReplyDeleteI am so sorry for what you go through every day. I know you wouldn't trade your daughter for anything, but like any Mother, you hate seeing your baby suffer. I'm not sure anyone has the answer as to why God allows the suffering of children. Of course we know the world is not perfect, and until we get to Heaven, there will be suffering. As short sighted humans, it's just impossible for us to see God's entire plan for us. But I know right now, it still sticks.
Cheryl, the woman who sent you the "Miracle Mail" package, lost her daughter when she was 11. Haley wrote and sang songs for Jesus, and had an unbreakable spirit, yet she suffered incredible every day for 5 years, until she died. Cheryl went through unimaginable pain, but of course, even if she had known the outcome, she would do it all over again.
The thing is, is that God hasn't given you enough strength to deal with RTS. You just can't do it alone, and that's OK - God never wants you too. It may sound cliche, but he gives us more then we can bare, so that we eventually say "OK, God, I give up - YOU do it."
Just renumber that it's OK to have crummy days - weeks?! - it's OK to hate RTS...heck, it's OK to be mad at God. Just also keep in mind that even when we don't have the energy to pray - He's there.
The LORD is close to the brokenhearted and saves those who are crushed in spirit. A righteous man may have many troubles, but the LORD delivers him from them all; Psalm 34:18, 19
Katie,
ReplyDeleteyou have talked to my wife, Jami, on the phone and via email a few times. I just got home from the RTS conference and Jami will be home tomorrow. It was a great experience and we can give you a copy of all the handouts we got. I know you and Jami are both extremely busy and we all have our hands full, I hope that you two can get together soon. Spending time with the other families that are going through the same thing this weekend helped tremendously and I believe that our families are very fortunate to be so close to each other so we can help each other. I really look forward to meeting your family, hopefully soon. Jami does not do facebook, however I do. I have not been able to find any pages on RTS besides one out of Europe, do you know of any others? Thanks
Hey Kevin,
ReplyDeleteSo glad you found me! I would love a copy of anything you have to share! I plan on bringing some things for Jami to look at on Thursday. Yes, we are so fortunate to live so close. It helps to share with someone who is going through the same things. Did you know there is another family in Fayette County? They have a little boy as well. I sent out many friend suggestions for you so I am sure you will soon be bombarded with friend requests. (I have at least 80 friends on facebook who are RTS families.) Its an adventurous road we're heading down and know that you have so much support! Jami has my number so I never want her to hesitate to call me! I am available for questions or just someone to talk to or cry to! (Even at 3am) It gets rough at times but many more happy times than sad. :) Our children are beautiful blessings for sure! Nice to meet you!