1 month ago today...

Exactly 1 month ago today we welcomed our sweet, precious, mild mannered, amazing, baby girl into our lives and they were forever changed.

Sitting here typing this my mom has my baby in her arms. What a difference a month makes. Last month it was snowy, this month the tulips have bloomed and its a beautiful day. Last month my little girl was being transported to Children's Hospital awaiting her first of 2 major surgeries that she would have before she was even 2 weeks old, now we are able to hold her, dress her, change her, feed her, and care for her. I took all these things for granted before I wasn't able to do them for 2 and a half weeks what an eye opener. I can't say I look forward to diaper changes but I do them with a smile on my face because I get to do it rather then a nurse.

I am forever a changed person because of one 10.6 pound little girl. I am in complete awe of her. She amazes me. I tell Peter every night how amazed I am at her. For every reason that she has to fuss and cry she doesn't. Instead she coo's and is always adorable and sweet. We have been so blessed by this little girl.

Since my last post we've been to physical therapy, we had a follow up with Dr. Pan, Emma's wonderful plastic surgeon, and we went to High Risk clinic. Everything has gone great. The doctors are still so impressed by her and her healing!

Before the High Risk clinic we were feeding and cathing her every 3 hours, now we can do this every four. Its amazing what one measly little hour will do for you.

In other exciting news we are pretty sure we've seen movement in both her left and right leg! PRAISE GOD!!

We  have been so blessed by those who have picked us up and "adopted" us. Our amazing church family has provided meals, they've done hard labor (yard work) and most importantly everyone who has come along side us on this journey means more to us then we can ever put into words! We thank you for your love and support. We ask for continued prayers. For Emma's continued healing, and that her shunt continues to function properly without issues. Also please pray that Peter and I continue to be vigilant to her needs. I pray for this every day. I am so nervous about her shunt and her Chiari II malformation and the issues these could cause for her. I lift it up to God and know that he is ultimately in control of my sweet Emma. Thank you again for your prayers, support, generosity, and time it is greatly appreciated!

Now for the pictures!

No these AREN'T my real ears.

AHHHHHHHHHH! 

Me and daddy! 

WHAT?! That's what I thought.

Mommy and I

I've had it! 

I'll cooperate for JUST ONE MORE! 

WE ARE HOME!!!

We broke her out (with permission of course). We were able to bring our girl home on Friday April 12! It was such a great day! We had to bring her home with her NG tube but we didn't care. The attending for the NICU said she'll have to go home with the NG tube are you willing to do that? UHHH DUH... yes we are willing to do whatever we have to do to get our girl home!!! We were actually able to pull the NG tube yesterday! PRAISE GOD! She has been taking her feeds all by mouth for the past few days and when a nurse from the NICU called to check on us I asked her about it and she said their general rule is if they are taking their feeds for 24 hours then you can pull it. So out it came!

She had to have an MRI on Thursday for Dr. Stevenson and he came up on Friday to review the results and said that it was all looking like he had expected. PRAISE GOD! Everyone at the NICU loved our Rolly Girl as she has been nicknamed by Dr. Stevenson. Typically they don't have chunky babies in the NICU, so I think it was kind of a delight that they had one!

She also had her wound-vac removed on Thursday. That was the one last tube that was tying her down. We were given instructions on how to pack her wounds so they can continue to heal. It was intimidating at first but we've since gotten the hang of it. We realized the other side had opened a bit more but the doctor is ok with it. We just have to now pack that side as well. We actually have an appointment with Dr. Pan today to check her wounds and make sure everything is healing well. We have been so blessed to have such amazing doctors! Every doctor we've encountered we've really liked, while the NICU was tough we are so blessed to live in a city where we have the medical accessibility that we have!

Also another positive note is that we've seen Emma have some movement in her left leg! WAHOOOOOOOOOOO!!!!!!!!!!! This is WONDERFUL news!!

Thank you for your prayers, thoughts and continued support. I ask that you continue to pray for Emma as she heals, and grows! Please pray that God continue to bless her healing. Also pray for us as we adjust to our new life as parents, pray that we remain vigilant to her needs, and that God continue his work on our girl!

Now I will leave you with some pictures from our past week together at home!

This was on our way to physical therapy! She aced that like a champ! 

On our way to the pediatrician. 

Right before the NG tube was pulled. 

Its on its way out.

This is what my face looks like with out the tape and tube. 

Doing a little exercising. 

 

Getting ready to break out. 

This was within our first minutes at home!! Couldn't be any happier. 

Daddy holding our girl! 

Tummy time  = Nappy time

We have determined she likes the car! 

Update from the NICU

So were still at Children's but our hopes of going home are getting closer to our reach! Such a blessing!

My last quick update was about Emma having several seizures right after her surgery. They were able to do an EEG the next day, they just carefully covered up her incisions. She was monitored for about 22 hours and it showed a little activity but nothing alarming. Granted she was on anti-seizure medication but my understanding of it is that she would still have the brain activity of a seizure just not the physical attributes of one. She will go home on a regular dose of phenobarbital, just as a preventative. Thank you for your prayers and please continue to pray that it was an isolated incident and that she will not have any more seizures.

We are getting cautiously hopeful about our departure from Children's. She has to have a urology study  done before we can go to determine if her bladder is refluxing into her kidneys. She is being intermittently catheterized right now every 6 hours. So hopefully this won't change after that study. This study is the last thing to check off our list, and of course Emma's continued healing so that we can go home. Please continue to pray for her healing and for good results from the urology study.

Thank you for your prayers for our little girl. Please continue them for growing, continued health and healing, and for prayers for our family! Thank you again, Peter and I and our families appreciate your thoughts and prayers.

Please pray

I know you all have been faithfully praying for our girl but please say a special prayer or two. Emma had her permanent surgery last night at 3:30 pm which is such a blessing because we didn't think it would happen this week. Before they started surgery Dr. Stephenson called to say she had seizure like activity. They took her to a CT scan and it came back ok PRAISE GOD!!! When they were getting her settled into her room she had a two minute one, and then while I was holding her, YES I got to hold her last night it was AMAZING!!! My heart swelled with joy, but shortly after I got her in my arms she had another seizure this one lasting 11 minutes. Their still not sure the cause, children with hydrocephalus are more prone to seizures, but it could also be surgery related. At the moment they can't do an EEG because of her incision site. We appreciate your prayers for healing over our little girl and also prayers that this is an isolated incident and that it doesn't happen again.

Thank you again hopefully I can post more soon!!!!

She's Here!!!

We are pleased to announce the birth of our BEAUTIFUL baby girl Emma Anne!!! She was born at 8:50 am and weighed 9 pounds 10 ounces! The c-section went smoothly and without any complications! Praise God!!!

As we expected her back was covered and wrapped, then she and Peter went to the NICU at Good Samaritan while they finished up my c-section. There she was weighed, and they started an IV and prepared her for transport to Children's Hospital. They had a VERY hard time starting an IV, she gets that honestly from me, but they finally got her started on one and brought her down to me in the recovery room before she was transferred! This was really the first time I got to see my sweet baby girl! She is GORGEOUS! I was in so in love with this perfect little angel from the second I heard her cry! 

They transported her to Children's and Peter, my mom and his mom all went there too. They got Emma all settled into her pod and then they allowed family to see her! At Children's they gave her a day to just chill before she had to go into surgery. Surgery happened Tuesday around 12:30 pm. She soared through it beautifully. Her hydrocephalus was pretty severe though so they had to give her an EVD, which is an external temporary shunt. Dr. Stevenson didn't want to do both surgeries at once given the length of them both. Also due to the size of her lesion they had to make incisions on either side of her abdomen so they could use that give to close her back up. This was done by a plastic surgeon so her scarring will be minimal. 

Her recovery has been beautiful! She's uncomfortable though obviously because of all the things that she has had done in a week, but also because of her EVD and back closure she has to lay on her tummy with her head facing left at all times. She isn't allowed to turn her head over at all. This will change though with her permanent shunt. This has also made eating difficult, but we have it sort of figured out for now.In the pictures you can see that she had to get an NG tube, this was because they have such high expectations of how much she should be eating (80 ml, which is about 2.5 oz) so she can have the best nutrition heading into another surgery and just to aide in her recovery. They expect that she eat this amount every three hours, which is A LOT for a newborn to eat. She can still try the bottle and whatever she doesn't eat from that she has to take through the tube. All the doctors are so pleased with her and how she is progressing. Right now they are discussing surgery for the shunt placement on Thursday the 4th or Friday the 5th. 

 Peter and I are over the moon in love with this little girl! I knew the kind of love that we had for her while I was pregnant with her but never imagined how much more I was capable of. 

We appreciate your prayers, thoughts, and concerns for our little family! We ask for continued prayer as she recovers and heads into another surgery that God would watch over and protect our little girl we pray that he keep her out of as much pain as possible! We ask for prayers for comfort and peace to come over us as we watch our baby girl go through so much more then Peter and I could ever imagine enduring. 

Now I leave you with pictures, because like I've said all along, she is all that matters!!! 

Pardon the spit up... its hard to eat while laying on your belly. 

We celebrated our first Easter! The Easter Bunny even came! 

(Not sure why this one won't rotate), but aren't I cute sideways too? 

Like my bunny hat? 

Thanks Gigi for my Easter basket! 

One happy family!