November 18-21, 2015

I spoke to my nurse on the phone at 7:30 pm on Tuesday evening who finally had the information that Anna's surgery would be on Thursday. At 2 am I got another phone call from the hospital. Anna's airway had collapsed again and they had to intubate her.  It was a traumatic intubation that took 6 attempts (2 nasally and 4 orally) because her airway was so collapsed. They ended up using a smaller tube and getting it in. 

I headed down to the hospital right away. When I arrived Anna was somewhat uncomfortable, so they started her on some sedation medication. As I'm sure she was in some pain and also we cannot have those little hands grabbing at her tube. She had a fairly quiet day although she does require frequent suctioning when intubated. They are questioning at this point whether it is a sepsis infection or if it was just her airway collapsing.

On Thursday early morning she needed a new iv site which only lasted a couple hours and she needed another new site. She had a fairly good day with small wake ups where she would look around and hear us talking. Her Crp level in her blood came back high, which points to an infection - so surgery is off until next week. Her bowel had slowed right down and near the end of the day she also had some blood come up her ng. This concerned them so they did an xray of her belly. It came back as not being normal. They put her on an antacid like medication to help settle her Tummy. They also decided to try put in a picc line, because they wanted to give her a transfusion. They were unfortunately unsuccessful with establishing a picc, but did get another iv line in. This allowed them to use one line to Give her plasma and blood. She looked a little like a robot since she needed both hands taped to boards to help them run properly and hopefully maintain them longer.

On Friday morning she was very puffy from getting all that extra fluid the night before. She looked a little like the michelin man - poor girl! She is peeing it all out herself and was looking better by the end of the day. They are presuming today she has a sepsis infection, although all the cultures came back negative. She needs at least 5 days of antibiotics before they will think about sending her down to the or. So we are looking at around mid next week. She is still being lightly sedated to keep her comfortable and had a good day. She was wide awake all morning long and then settled into sleep all afternoon.

Overnight on Friday she lost both of her hand iv's, so she had another iv into her head Saturday morning. It also did not look like it was going to last long, so they decided to try for a picc. Again it was unsuccessful :( - they did manage to get another iv in for the time being. So many pokes and prods for our little girl! She was running a bit of a fever in the morning, but just having her unwrapped helped cool her to a normal temperature. They are very slowly starting to introduce her feeds again (only 3ml an hour to start). She was otherwise content and happy - with some wake periods again.

Thank you all for your continued prayers! It's been another hard week! We just want you to know that we do read all the cards, messages, etc and appreciate them all (even if we don't get a chance to respond). Please pray that Anna will be well enough for surgery this coming week and that it will go well! Pray that our big kids will have a good week even though it is likely mom and dad won't be home much! It is such a struggle to find that balance of where we are needed most. Pray that the Lord will give us all the strength and comfort we need. This week has been tough and discouraging and next week will be another tough one!

Answer me quickly, O Lord! My spirit fails! Hide not your face from me, lest I be like this who go down to the pit. Let me hear in the morning of your steadfast love, for in you I trust. Make me know the way I should go, for to you I life up my soul.
Psalm 143: 7-8

November 11-17, 2015

They decided to give Anna one more chance off CPAP before committing to the scope. I'm not sure why - as it was very apparent to me she wouldn't be able to do it. I gave her a bath on Wednesday with it off and she was working to breath, just in those few minutes.

So Thursday morning they had her off cpap for 20 minutes before they put it back on. No surprise here! She has been on a cpap peep of 6 and sometimes a little oxygen. In the afternoon, the other ENT doctor came up and did a bedside scope. He agreed that she needed to be booked for a rigid bronch scope to see her entire airway.

Friday was a busy day for Anna! She started the day with a visit from her occupational therapist. Her muscle tone is very normal and she was very happy with how alert Anna is. ENT and General Surgery both came up a couple times to get my approval for the surgery. She also had a hip ultrasound and xray as they haven't been looked at since she was first born. They are just trying to decide when to start bracing/casting them.

Saturday and Sunday were fairly standard weekend days. Not much happens besides snuggles for Anna! She got some special first snuggles from her Beppe and Grandma!

Monday was another quiet day. I had a big long snuggle with Anna and waited (impatiently) to find out when her surgery would be. She had bloodwork done, so she is all prepared for surgery.

We started Tuesday off with a nice and warm bath and finished it off with a big snuggle! It was another quiet day in the pod. We were at home getting the kids ready for bed when we finally got word that her surgery will be Thursday at 3pm.

Please keep Anna (and us) in your prayers these next couple of days. We aren't sure what the outcome of the surgery will be. If she will need a trach or not. Please pray that the surgery may go well and the doctors may have all that they need.

I lift up my eyes to the hills.
From where does my help come?
My help comes from the LORD,
who made heaven and earth.

He will not let your foot be moved;
he who keeps you will not slumber.
Behold, he who keeps Israel
will neither slumber nor sleep.

The LORD is your keeper;
the LORD is your shade on your right hand.
The sun shall not strike you by day,
nor the moon by night.

The LORD will keep you from all evil;
he will keep your life.
The LORD will keep
your going out and your coming in
from this time forth and forevermore.
Psalm 121

November 5-10, 2015

They continued to wean the peep on Anna's CPAP on Thursday. She went down to a peep of 4. She was tolerating it okay, so they plan to try decrease it again. She also got her first immunization! Ouch!

On Friday morning when I came in they had her up to a peep of 5.5 as she was starting to have more and more desating spells and showing work of breathing. I was giving her a snuggle and noticing that she was very uncomfortable and seemed to be fighting to get air in. The Respiratory therapist came and assessed her and agreed with me. She put her up to a peep of 7 and gave her a little oxygen. This worked and she settled out to sleep and her colour improved drastically. Anna is showing us more and more that her airway is likely a problem. ENT (Ears, nose & throat) came and did another scope up to her vocal cords. It showed that she may have some reflux, but no other issues.
Friday was a hard day for me (even though it was my birthday!) Emotions from all that we have learned this week caught up to me. I had a good chat with our social worker and have a few primary nurses assigned to Anna now (as that was a large source of frustration this past week.) She is 2 months old!!

Ryan and I enjoyed snuggling with Anna on Saturday and Sunday. She was content and comfortable, which was nice to see after a few hard days for her. They were able to wean her down to a peep of 6, although she is still needing oxygen at times.

Monday was like another weekend day at the hospital. It was a fake "stat" holiday, so there was nothing extra happening at the hospital. I was able to give Anna a bath in the afternoon. She is now up to 2554g (5lbs 10oz)!! No change was made to her settings on CPAP as her breathing does not seem to be improving. She is still needing some O2 and desating fairly regularly.

Anna's regular team was all back on Tuesday, which is great as they are the ones who have been following her since the beginning. They would like to go ahead and do a Rigid Bronch Scope. This will involve Anna going down to the OR and being sedated, so they can have a look at the area below her vocal cords (larynx). They are arranging a meeting with the team, ENT and us, so we can fully understand what this could mean. They do not like to send baby's down to the OR often, so they try to do anything needed when they do. They plan on putting a G tube into Anna's stomach for her feeds, since slow growth is going to be an ongoing issue with her. It is also possible, that if her airway is compromised that they will put in a trach.

In the past few weeks, I have met quite a number of people with children who have genetic disorders. I have seen children with trach's and g-tubes. Talked to parents of children with trach's and/or g-tubes. I see the Lord's hand in all this. Seeing and talking about it with other parents makes it a little less scary! We tend to be afraid of the unknown and the Lord blessed us by having these people cross our path.

Please continue to pray for Anna's doctors as they decide what is the right plan for her. Pray for us as we will soon have a meeting to learn more about these new devices that Anna may need. And of course, continue to pray for Anna, that she may improve in her health, so we can bring her home with us soon.

For the Lord will not cast off forever, but, though he cause grief, he will have compassion according to the abundance of his steadfast love; for he does not afflict from his heart or grieve the children of men. 

Lamentations 3:31-33

November 2-4, 2015

Monday started like any other day with Anna. I gave her a good snuggle and was enjoying a visit with my sister as well. We were waiting for the "team" to make their rounds to see what the plan for Anna would be for the next few days. She was doing very well on CPAP with minimum support and was wide eyed all morning. She had another ECHO done to see if her PDA had changed at all.

They were going over her recent test results when it was noticed that the micro-array (genetic testing) had come back. At that moment the geneticist also called up to come bring us the results that we had waited 8 long weeks for. 

Our little Miss Anna has Cri du Chat syndrome.

Cri du chat, pronounced, syndrome is French for “cry of the cat.” The syndrome is typically diagnosed in infants who characteristically have a high-pitched, “cat-like” cry. Anna's cry is so quiet that it does not fit in with the characteristic cry.Other common characteristics include: round face, wide-spread eyes (hypertelorism), extra fold of skin in the corners of the eyes (epicanthal folds), a flattened and widened nasal bridge, low set ears, and a single crease (simian crease) on the palms of the hands. These individuals tend to have cognitive, gross and fine motor delays. Speech and language delays are also typically one of the main characteristics of the syndrome. Although children with Cri du chat syndrome are able to understand much more than they can express. Cri du chat syndrome occurs when there is a loss of genes on the short arm (or “p” portion) of the 5th chromosome. It is one of the most common known deletion syndromes although it only affects about 1 in 35,000 to 50,000 live births.

God has given us this gift that we did not expect, but he knows Anna fully and completely. He formed her and knew her in my womb. We have so many questions about what the future will bring; and He knows the answers but we do not. On our own, we feel so unequipped to take on this task of raising little Anna, so we must rely heavily on the Lord to provide all that we need.

On Tuesday, Ryan and I had another meeting with the geneticist to discuss any questions we had and learn a little more about Cri du Chat. We also, of course, got our snuggles in with Anna :)  

Anna started another trial off CPAP on Wednesday morning. She again showed quickly that she was working to breath, so they decided to try her on high flow. Unfortunately she had some apneic moments, where she stopped breathing and needed stimulation and oxygen to get her breathing again. So for now she is back on CPAP and they are trying to wean the peep on the CPAP very slowly to see if that works. Knowing her diagnosis now - we know even more that even little things may take Anna extra time to learn. 

Please continue to pray for this beautiful covenant child as she will have many challenges to work through. Pray that we can embrace this challenge and be provided with all that we need.

I knew you before I formed you in your mother's womb. Before you were born I set you apart.

Jeremiah 1:5

October 29-November 1, 2015

On Thursday Anna was weaned down on her CPAP to a peep of 5. She had a good day with not too much going on.

On Friday Anna's PICC line was taken out as her antibiotics are completed! Yay! She seems like she is feeling completely better and is her usual self.

On Saturday morning Ryan had a good long snuggle with Anna. When he finished holding her and settled her back in her crib, they started a trial with her off CPAP. Since it was halloween - we couldn't resist dressing her up. Isn't she the cutest little dalmatian puppy?! :) Ryan and I headed out to go trick r treating with the kids in the late afternoon. They had lots of fun! In the evening, Ryan and I called into the hospital to see how Anna was doing and she was back on CPAP by 10 pm. She had increased work of breathing and was starting to desat often. So they will give her another few days on CPAP and then give her another try.

Ryan and I spent Sunday afternoon with Anna and we both got a nice snuggle in. She was still recovering from her day off CPAP, so was quite sleepy. Our little miss is 8 weeks old and just over 5lbs now!!

Keep praying that Anna can succeed off of CPAP soon! That will get us on the road heading toward home.

The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.

Zephaniah 3:17